+ All Categories
Home > Documents > 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort...

2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort...

Date post: 22-May-2020
Category:
Upload: others
View: 2 times
Download: 0 times
Share this document with a friend
64
Transcript
Page 1: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media
Page 2: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

We are excited that you are joining us for the 2014 Society Leadership Conference. The conference is a unique opportunity for outstanding leaders to celebrate, motivate, inspire, learn, share, network and reenergize to maximize our individual and collective impact.

This year, our focus is on “Fueling Impact,” which encourages us to celebrate and grow our personal and collective impact as leaders in the MS movement, and highlights our responsibility to inspire and empower others to leverage and extend their passion, skills and connections even further.

WELCOME

TO FORT WORTH

WELCOME!

Page 3: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

SOCIETY LEADERSHIPCONFERENCE

2014

Connecting exceptional leaders in the MS movement!

FUELING IMPACT 1

Through general sessions, workshops and other formal and informal networking opportunities – we’ll meet and collaborate with other leaders who can help us create even greater impact.

Keynote speaker Leslie Crutchfield, author of the best-selling Forces for Good: The Six Practices of High-Impact Nonprofits, will share her learning about how great nonprofits can achieve extraordinary levels of impact – including ideas that will equip volunteers, donors and staff to accelerate progress in changing the world for those affected by MS.

The National MS Society Wellness Strategy Meeting, being held in conjunction with the Society Leadership Conference, features experts from across the country coming together to learn about how important wellness is to the MS community and how the Society is integrating wellness more deeply into its strategic plan.

Society ambassador Zoe Koplowitz will help us honor some of our brightest stars with the fanfare they deserve on Friday evening. And the celebration doesn’t end there! We’ll enjoy a special Clay Walker concert on Friday night and take advantage of our time together to recognize key leaders and connections throughout the conference.

Please invite friends, family and colleagues to help you extend your impact following the conference. All attendees will receive post-conference materials to utilize and share with others during the coming year. And you can use #ImpactMS on social media to share your experiences and follow conference happenings. See inside cover for details.

We look forward to learning, sharing and celebrating with you during this special time. This year’s conference will equip, focus, energize and connect us in new, inspiring ways that will help us change the world for everyone affected by MS.

Very truly yours,

Cyndi Zagieboylo, President and CEO National MS Society

Eli Rubenstein, National Board Chair National MS Society

Page 4: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

GET SOCIALShare what you learn at the conference with your friends, family and colleagues. Use the hashtag #ImpactMS on Facebook, Twitter, Instagram and Pinterest to share your experience and follow conference happenings.

GET UPDATESText IMPACT to 68686 to receive Conference updates via text message (message and data rates may apply).

GET THE APPDownload the mobile application for iPhone/iPad and Android to manage your schedule, keep track of your workshops, view floor maps of the hotel, and more.

ntl.ms/MSapp2014

(text APP to 68686 to receive the link via text message)

GET AROUND TOWNEnjoy Fort Worth’s Digital Visitors Guide to help you make the most of your time.

ntl.ms/FortWorthGuide

ONLINE & MOBILE

CONFERENCEWIRELESSINTERNETNetwork:SocietyConferencePassword:society2014

GET CONNECTED

Page 5: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Schedule of Events & Daily Calendar 4

Workshop Descriptions 13

Hotel Floorplans 18

Volunteer Recognition 20

Circle of Influence 33

Circle of Distinction 34

Chairman’s Circle 37

Special Guests 39

Sponsor Recognition 45

WHAT’SINSIDE

FUELING IMPACT 3

Page 6: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

[ PRE-CONFERENCE ]

WEDNESDAY,NOVEMBER 5

11:00 am – 6:30 pm

Society Leadership andManagement Team MeetingFort Worth 4

(Invitation Only)

SCHEDULE

OF EVENTS

4 2014 SOCIETY LEADERSHIP CONFERENCE

Page 7: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

[ PRE-CONFERENCE ]

THURSDAY,NOVEMBER 67:00 am - 9:00 am

National Board of DirectorsInvestment Committee Fort Worth 1 & 2(Invitation Only)

9:15 am - 10:45 am

National Board of DirectorsGovernance Committee Fort Worth 1 & 2(Invitation Only)

11:00 am - 1:30 pm

National Board of DirectorsChapter Relations Committee Fort Worth 4(Invitation Only)

1:45 pm - 3:45 pm

National Board of DirectorsFinance Committee Fort Worth 4(Invitation Only)

1:45 pm - 3:45 pm

Joint Region Volunteer LeadershipCouncil/Region ManagementTeam MeetingFort Worth 5(Invitation Only)

[ DAY 1 OF CONFERENCE ]

THURSDAY,NOVEMBER 69:00 am – 4:00 pm

Technology Café OpenFoyer

12:00 pm – 4:00 pm

Registration/Information Desk OpenFoyer

4:00 pm - 5:00 pm

Opening General SessionTexas Ballroom

5:00 pm – 6:00 pm

Registration/Information Desk OpenFoyer

5:00 pm - 6:30 pm

Welcome Reception Fort Worth 4 & 5

FUELING IMPACT 5

Page 8: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

[ DAY 2 OF CONFERENCE ]

FRIDAY,NOVEMBER 7

8:00 am - 9:15 am

Morning General Session Texas Ballroom

8:00 am - 4:00 pm

Registration/InformationDesk Open Foyer

9:15 am – 12:00 pm

Technology Café Open Foyer

6 2014 SOCIETY LEADERSHIP CONFERENCE

FRIDAY

SCHEDULEWORKSHOPS [ 9:30 am - 10:30 am ]

Celebrating Our Team CaptainsFort Worth 4

Driving Change through ActivismSundance 6

Engaging Volunteers in Community OutreachSundance 2

Fueling Impact through Storytelling – Part 1Sundance 1

High-Impact Research to Change LivesSundance 5

What Every Volunteer Wants to KnowAbout the SocietySundance 3

9:30 am - 10:30 am

New Chapter Chair Orientation – Part 1Fort Worth 5

(Invitation Only)

9:30 am - 12:00 pm

National Board of Directors MeetingFort Worth 6,7,8(Invitation Only)

10:45 am – 12:00 pm

New Chapter Chair Orientation – Part 2Fort Worth 5

(Invitation Only)

Page 9: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

WORKSHOPS [ 10:45 am - 12:00 pm ]

Creating Successful Fundraising TeamsFort Worth 4

Fueling Impact through Storytelling – Part 1Sundance 1

Fueling the Movement – Unforgettableand Unique Fundraising ExperiencesSundance 2

Networking RoundtablesSundance 6

Social Media 101Sundance 5

What Every Volunteer Wants to KnowAbout the SocietySundance 3

12:15 pm - 1:30 pm

Lunch General SessionTexas Ballroom

1:30 pm – 3:30 pm

Sponsor ExpoFoyerAn opportunity for conference attendees to learn about and interact with select organizations who are committed to the Society Leadership Conference and the MS movement.

1:30 pm – 4:30 pm

Technology Café Open Foyer

1:45 pm - 5:15 pm

Delegate Assembly MeetingFort Worth 1, 2, 3, 4, 5(Invitation Only)

WORKSHOPS [ 3:45 pm - 5:00 pm ]

Fueling Impact through Storytelling – Part 2Sundance 1

How to Maximize Event Fundraising and Team Building through Social Media and Online ToolsSundance 2

Networking: Bike MSSundance 3

Networking: Walk MS and Other EventsSundance 4

The Opportunity To AskSundance 5

Wellness and MS: Highlights and Learnings from the National MS Society Wellness Strategy MeetingSundance 6

5:30 pm - 6:00 pm

Cocktail Reception Texas Ballroom

5:30 pm - 6:15 pm

New Chapter Chair Reception Sundance 5(Invitation Only)

6:30 pm - 8:15 pm

Evening General Session,Dinner & Awards Ceremony Texas Ballroom(Cocktail Attire)

8:15 pm - 9:30 pm

Clay Walker Concert Texas Ballroom

FUELING IMPACT 7

Page 10: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

[ DAY 3 OF CONFERENCE ]

SATURDAY,NOVEMBER 8

7:30 am - 8:45 am

Continental BreakfastFort Worth 4 & 5

WORKSHOPS [ 8:00 am - 9:00 am ]

Access to Disease Modifying Treatments:MS Coalition Consensus PaperFort Worth 8

Engaging Volunteers inCommunity OutreachFort Worth 2

How to Maximize Event Fundraising and Team Building through Social Media and Online ToolsFort Worth 7

High-Impact Research to Change LivesFort Worth 5

Making Your CorporateConnections CountFort Worth 4

What Every Volunteer Wants to KnowAbout the SocietyFort Worth 1

8 2014 SOCIETY LEADERSHIP CONFERENCE

SATURDAY

SCHEDULE

Page 11: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

8:00 am – 10:00 am

Technology Café Open Foyer

8:00 am - 10:15 am

National Board of DirectorsNew Member OrientationSundance 1(Invitation Only)

8:45 am - 10:15 am

National Volunteer Leadership Council MeetingSundance 4(Invitation Only)

WORKSHOPS [ 9:15 am - 10:15 am ]

Be Inspired. Get Connected. Walk MS.Fort Worth 2

Cognitive Challenges and MS:What We Know and What You Can DoFort Worth 5

Driving Change through ActivismFort Worth 3

How Great Teams Organize for SuccessFort Worth 4

Networking RoundtablesFort Worth 1

The Opportunity To AskFort Worth 6

10:30 am - 11:45 am

Closing General Session& To-Go LunchTexas Ballroom

FUELING IMPACT 9

Page 12: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

n General Sessions n Workshops n Other Conference Activities n Invitation Only

7:00am–8:00am

8:00am–9:00am

9:00am–10:00am

10:00am–11:00am

11:00am–12:00pm

12:00pm–1:00pm

1:00pm–2:00pm

2:00pm–3:00pm

3:00pm–4:00pm

4:00pm–5:00pm

5:00pm–6:00pm

6:00pm–7:00pm

4:00pm–5:00pm Opening

General Session

9:00am–4:00pm Technology Café

Open

12:00pm–4:00pm Registration/InformationDesk Open

11:00am–1:30pm National Board of Directors Chapter

Relations Committee

9:15am–10:45am National Board of

Directors Governance Committee

1:45pm–3:45pm National Board ofDirectors Finance

Committee Meeting

1:45pm–3:45pm Joint Region Volunteer

Leadership Council/Region Management

Team Meeting

5:00pm–6:30pm Welcome Reception

5:00pm–6:00pm Registration/Information

Desk Open

7:00am–9:00am National Board of

Directors Investment Committee

10 2014 SOCIETY LEADERSHIP CONFERENCE

DAILY

CALENDAR

THURSDAYNOVEMBER 6

Page 13: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

n General Sessions n Workshops n Other Conference Activities n Invitation Only

9:30am–10:30amNew Chapter ChairOrientation – Part 1

10:45am–12:00pmNew Chapter Chair Orientation – Part 2

9:30am–12:00pmNational Board of Directors Meeting

1:45pm–5:15pmDelegate Assembly

Meeting

12:15pm–1:30pmLunch -

General Session

5:30pm–6:00pmCocktail Reception

6:30pm–8:15pmEvening General

Session - Dinner &Awards Ceremony

8:00am–9:15am Morning

General Session

1:30pm–3:30pm Sponsor Expo

8:15pm–9:30pm Clay Walker Concert

8:00am–9:00am

9:00am–10:00am

10:00am–11:00am

11:00am–12:00pm

12:00pm–1:00pm

1:00pm–2:00pm

2:00pm–3:00pm

3:00pm–4:00pm

4:00pm–5:00pm

5:00pm–6:00pm

6:00pm–7:00pm

7:00pm–8:00pm

8:00pm–9:00pm

9:00pm–9:30pm

1:30pm–4:30pm Technology Café

Open

FRIDAYNOVEMBER 7

8:00am–4:00pm Registration/InformationDesk Open

9:15am–12:00pm Technology Café

Open

9:30am–10:30am Workshops

3:45pm–5:00pm Workshops

10:45am–12:00pm Workshops

FUELING IMPACT 11

5:30pm–6:15pmNew Chapter Chair

Reception

Page 14: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

7:00am-8:00am

8:00am–9:00am

9:00am–10:00am

10:00am–11:00am

11:00am–12:00pm

8:00am–10:00am Technology Café

Open

7:30am–8:45am Continental

Breakfast8:00am–9:00am

Workshops

9:15am–10:15am Workshops

8:00am–10:15am National Board of

Directors - NewMember Orientation 8:45am–10:15am

National Volunteer Leadership Council

Meeting

10:30am–11:45amLunch -

Closing General Session& To-Go Lunch

12 2014 SOCIETY LEADERSHIP CONFERENCE

n General Sessions n Workshops n Other Conference Activities n Invitation Only

DAILY

CALENDAR

SATURDAYNOVEMBER 8

Page 15: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Access to Disease Modifying Treatments: MS Coalition Consensus Paper

Today there are 11 disease-modifying therapies approved to treat relapsing forms of MS. Although early and ongoing treatment has been determined to be essential, decision-making and access to the medications can be challenging. This workshop will introduce an important new tool that reflects consensus among the eight member organizations of the MS Coalition and more than 40 expert reviewers about the importance of access to the full range of treatment options based on individual needs. The paper will be used to guide clinical decision-making by physicians and their patients, and serve as an advocacy tool with insurers to promote access to these treatments. Workshop presenters will also outline the FDA approval process and describe medications newly approved or in the pipeline that will need to be incorporated as the paper is updated on a regular basis.

Be Inspired. Get Connected.Walk MS.

There’s no place like Walk MS to help fuel the movement. Whether you already participate in Walk MS or are looking for a way to provide a meaningful experience for others, this workshop is for you! Walk MS is a fundraising experience unlike any other. This community event truly inspires, supports and engages people living with MS and those who care about them while raising money for cutting-edge research and programs and services. In this workshop, you will hear from Walk MS participants and team captains. Learn why they became involved and how they impact the movement with their participation. Everyone is welcome and by the end, you will have new tools to connect with friends, family and others through Walk MS.

WORKSHOP

DESCRIPTIONS

FUELING IMPACT 13

Page 16: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Celebrating Our Team CaptainsTeam captains are instrumental in driving the success of National MS Society fundraising goals. In this session, the Society celebrates team captain dedication, purpose and accomplishments. Come celebrate with other team captains while making valuable connections with other team captains from across the country.

Cognitive Challenges and MS: What We Know and What You Can Do Join a conversation between Jeffrey Gingold, a person living with MS-related cognitive challenges and Rosalind Kalb, a clinical psychologist, as they discuss what it’s like for individuals and families to “live inside the MS mental twister” and what can be done to address the challenges. Hear exciting research updates and learn the ins and outs of cognitive assessment along with practical tips and strategies for coping with cognitive challenges at home and at work.

Creating SuccessfulFundraising TeamsTeams are the driving force behind events like Walk MS and Bike MS. Learn from veteran team captains how to motivate your fellow teammates to reach your fundraising potential. Our panel of team captains is excited to share the tips and tricks they have used to grow their team fundraising totals!

Driving Change through Activism MS activists move together and speak with one voice to advance federal, state and community policies and programs to create change wherever it’s needed for people living with MS and their families. MS activists have garnered additional federal funding for treatments in the MS pipeline, developed partnerships with state legislatures to address underserved areas of MS care and made local transit more accessible. You’ll hear from fellow MS activists about how they drive change through MS activism.

Engaging Volunteers in Community Outreach

The Society aims to reach all those who might benefit from connecting to our programs, services, advocacy, fundraising and awareness activities. This workshop will describe innovative ways for volunteers to serve as a critical link to culturally diverse communities, rural communities and others. Increasing the visibility of the National MS Society and collaborating with community-based organizations and individuals in these communities will provide information, support and opportunities for engagement. Join us to learn about brand new tools and resources to help you be successful in this important outreach effort.

14 2014 SOCIETY LEADERSHIP CONFERENCE

WORKSHOP

DESCRIPTIONS

Page 17: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Fueling Impact through Storytelling- Part 1 Storytelling is at the heart of our shared human experience. Your story can be your most valuable asset to form connections, inspire action and drive change. This workshop will give you practical tips, real-life examples and helpful tools to create and share your story. We will explore the power of words, images and videos, as well as mediums and channels for telling our stories.

Fueling Impact through Storytelling – Part 2 This session builds on the earlier “Fueling Impact through Storytelling.” This highly interactive workshop will help put the tips you already learned into action. How can you share your personal story? Regardless of how you’re connected to the MS movement, you will leave this workshop equipped to put your story to work to fuel impact!

Fueling the Movement – Unforgettable and Unique Fundraising ExperiencesDo It Yourself (DIY) and Finish MS are fundraising opportunities for people from across the country with a deep commitment to the MS cause to raise awareness and critical funds in new and creative ways. Corporations, individuals, friends and families are doing just that and you will hear from an expert panel of organizers that are leaders in leveraging their own unique passions.

High-Impact Research to Change Lives Fueling innovative research and partnerships to stop MS, restore function and end the disease forever is a top priority for the Society and our constituents. During this workshop you will learn from experts about the latest research advances, challenges and new leads. You’ll also leave equipped to talk in simple terms about new initiatives, including a global collaboration to drive results and new treatments for progressive MS.

How Great Teams Organizefor SuccessTraining, fundraising, volunteers, jerseys, t-shirts, tents, accommodations, and transportation…oh my! Managing a team doesn’t need to be an overwhelming job. Learn from other team captains how they organize successful teams leading to a more fun and rewarding experience for everyone!

FUELING IMPACT 15

Page 18: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

How to Maximize Event Fundraising and TeamBuilding through SocialMedia and Online Tools

Unleash the power of social media and the MS Society’s online tools to propel your event fundraising efforts forward and to build and inspire your team. In this workshop, learn how to effectively use the Participant Center, Bike MS and Walk MS mobile apps, MSConnection.org, Facebook, Twitter, LinkedIn and Instagram.

Making Your Corporate Connections Count Engaging your corporate connections in our mission is a powerful way to support your fundraising goals and create impact in the MS movement. Learn how to strategically identify and maximize your corporate connections, while bringing value to a company through its involvement with the Society. Learn from others’ challenges and success stories and get tips for enlisting a company’s help in creating a world free of MS.

Networking Roundtables Networking is one of the best aspects of the Society Leadership Conference. This session is your opportunity to spend time exchanging ideas, successes and challenges with other conference attendees. A broad selection of topics will be offered. Develop your own leadership potential, explore new fundraising ideas, be an activist, engage families, learn more about living with MS and more. Pick a topic that interests you and connect with others!

Networking: Bike MSNetworking with peers is one of best aspects of the Society Leadership Conference. This session is your opportunity to spend time exchanging ideas, successes and challenges with other Bike MS team captains and fundraisers. Pick a topic that interests you and connect with others!

Networking: Walk MS andOther Events Networking with peers is one of best aspects of the Society Leadership Conference. This session is your opportunity to spend time exchanging ideas, successes and challenges with other Walk MS, Challenge Walk, MuckFest MS and other event team captains and fundraisers. Pick a topic that interests you and connect with others!

16 2014 SOCIETY LEADERSHIP CONFERENCE

WORKSHOP

DESCRIPTIONS

Page 19: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

The Opportunity to Ask Achieving a world free of MS requires all of us working together and engaging new individuals and groups in our movement. Learn how to ask those in your sphere of influence to join you in fueling our mission. You’ll hear from fellow leaders in the movement about how they identify their prospects, and learn how to apply the simple communication techniques they’ve used to result in a positive outcome.

Social Media 101 By now, you have heard how valuable, even essential, social media can be. But it can be a bit daunting to figure out where to begin and what to post on which social network! Whether you are completely new to social media or looking to join additional social networks, this workshop will take you through the basics of setting up an account on Facebook, Twitter, Instagram, Pinterest and LinkedIn and will cover best practices and tips for each of these social networks.

Wellness and MS:Highlights and Learnings from the National MS Society Wellness Strategy Meeting This workshop will report on the outcomes of the National MS Society’s Wellness Strategy Meeting. The Strategy Meeting includes researchers, clinicians, people with MS, and others who will share their knowledge and experience to help the Society formulate a research strategy and a strategic Society-wide approach to wellness

programs. Workshop presenters will summarize the research evidence presented at the meeting to support wellness and lifestyle interventions in diet, exercise and cognition/mood, and describe opportunities for future research to fill the gaps in our understanding. Workshop presenters will also describe next steps in the Society’s Wellness Initiative.

What Every Volunteer Wants to Know About the Society National MS Society volunteers are critical ambassadors of the organization to a variety of audiences— people with MS, the general public, event participants, legislators, donors, healthcare providers and more. Even though you may have a very specific role, it is vital to have knowledge and understanding of the entire organization so you can communicate effectively and passionately. In this workshop, you will learn how to speak confidently about the Society’s impact.

FUELING IMPACT 17

Page 20: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

2nd FLOORHOTEL

FLOORPLANS

18 2014 SOCIETY LEADERSHIP CONFERENCE

Fort Worth Ballroom

Sundance 1 Sundance 2 Sundance 3 Sundance 4 Sundance 5 Sundance 6

Fort WorthBallroom 5

Foyer

Foyer

Foyer

Foyer

Registration

Fort WorthBallroom 4

Fort WorthBallroom 2

Fort WorthBallroom 3

Fort WorthBallroom 1

Fort WorthBallroom 7

Fort WorthBallroom 6

Fort WorthBallroom 8

3rd FLOORSundance Rooms

Escalators Down

Elevators

Women’sRestroom

Men’sRestroom

Escalators Up

Page 21: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

2nd FLOOR

FUELING IMPACT 19

Omni Fort Worth Hotel

Grand Ballroom Foyer

Registration

Texas Ballroom FTexas Ballroom E

Texas Ballroom A

Texas Ballroom B

Texas Ballroom C

Texas Ballroom D

Texas Ballroom I

Texas Ballroom H

Texas Ballroom G

Texas Ballroom J

Texas Ballroom

Escalators Down

Elevators

Women’sRestroom

Men’sRestroom

Escalators Up

Foyer

Page 22: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Yolanda Treigut’s lifelong volunteer career and commitment started in 1978, shortly after she was diagnosed with MS. She attended a support group and within a few years began dedicating extensive time and effort to facilitating the South Cook MS self-help group. Since then, volunteering for many different roles at the National MS Society has become her fulltime career including captaining a top-fundraising Walk MS team for the past few years, serving on the Greater Illinois Board of Trustees and Finance Committee, chairing the Volunteer Development Committee, speaking out as an MS activist, and serving on many steering committees both locally and nationally. Yolanda has received multiple awards and accolades from the Society and the Chicago community for her involvement in improving the lives of people with disabilities through advocacy, programs support, fundraising and education. What keeps Yolanda motivated year after year is truly how she positively impacts the lives of others and their families living with MS.

VOLUNTEER

HALL OF FAME

Volunteer of the YearYolanda Treiguts Greater Illinois

20 2014 SOCIETY LEADERSHIP CONFERENCE

Page 23: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

VOLUNTEER

HALL OF FAME

FUELING IMPACT 21

Lifetime Achievement Honorees

Ruth CowanNew Jersey Metro

Thirty-nine years ago, licensed physical therapist, Ruth Cowan, recognized the need for aquatic therapy for people living with

MS, so she co-founded the Swim-In program in New Jersey. Ruth has since volunteered more than 3,000 hours. Swim-In is a free, once-a-week therapeutic swimming program where people with MS exercise and socialize. Swim-In has had an incredible impact on so many lives; through the years, both swimmers and volunteers – many recruited by Ruth – have shared positive experiences and supported one another. This past year, Ruth relocated to Texas to be near her family, yet came back to visit the program and continued to lend her experience as a consultant.

Thomas HoltackersUpper Midwest

Thomas Holtackers, physical therapist, first volunteered with the Society in 1979 — one year before he was

diagnosed with MS. After processing this news, Tom embarked on a lifelong mission devoted to an MS-free world. His career as a physical therapist gave him a unique perspective on living, working and thriving with MS; and he has dedicated his life to sharing that knowledge. Before his recent move to Arizona, Tom volunteered for countless Midwest programs, events, boards and committees — including more than 20 years on the Board of Trustees – and was an active fundraiser in 13

Challenge Walks (completed on his hand cycle!). Nationally, Tom served on the Programs Advisory Council, including a term as chair, and was a member of the Assisted Living Task Force. He also led national MS-group-leader training and presented at a variety of conferences. As an athlete, motivational speaker and published author, Tom inspires people wherever he goes.

Peter G. TarriconeNew Jersey Metro

Peter began his engagement as a volunteer fundraiser in 1970 and has been actively involved in many areas of

the Society’s work. He served as a local trustee from 1979 to 2000, chairing the local board for three years in the 1980s. He served on the National Board of Directors from 1989 to 2005, sharing his extensive experience in audit, risk management and insurance. Peter was a member of the National Advisory Council in 2006 and returned to the National Board in 2007, now chairing the Insurance Committee and serving on the Audit and Executive committees. Peter was instrumental in the formation of Fast Forward, and currently chairs both the Fast Forward Board of Managers and the Fast Forward Oversight Committee.

Page 24: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

22 2014 SOCIETY LEADERSHIP CONFERENCE

Advocacy Honorees

Kelly AllegraNew York City – Southern New York

After her diagnosis of MS, Kelly became an energetic grassroots volunteer; she

has since emerged as a persuasive activist leader and strong voice for disability rights through her tireless efforts at the local, state and federal levels. Kelly takes it upon -herself to attend town hall meetings, serve as a liaison to the Independent Living Center in Orange County, New York, and visits with local legislators. She worked to improve access to healthcare in New York through the expansion of Elderly Pharmaceutical Insurance Coverage (EPIC), the development of the Healthcare Exchange, Medicaid Expansion, supporting spousal refusal and opposing specialty tiering of high cost medications. She personalizes how these issues – and how MS research – can impact real families living with MS by painting the picture of her life as a mother who is concerned about her future and her ability to be there for her daughter.

Irene BurtonGreater Carolinas

Motivated by her diagnosis of MS at age 21, lifelong advocate Irene uses every

opportunity to speak out about and encourage funding for MS research. She faces the challenges of MS with strength and perseverance, sharing her experiences with Congress to demonstrate why we must move toward universal design, increased MS research, and a healthcare system that provides for those less fortunate, including the next generation. With roots in the Washington, D.C. area and experience in government, Irene and her husband, Don, are effective and dedicated activists, inspiring others as they share their passion for research – so that no one else has to face a diagnosis of MS at a young age.

Rachel ChapmanPacific South Coast

Upon her diagnosis of MS in 2004, Rachel immediately connected with the Society in order to educate herself

and her family about the disease. She realizes the importance of “speaking up” and “speaking out” while building relationships with those who can make a difference, and educating them on the issues that are important to people with MS, their families and their communities. Through visits, personal connection and persistent follow-up, Rachel has received support from state and federal legislators on important policies impacting research funding, access to and quality of healthcare, long-term care and caregiving, disability rights, accessible transportation and more. Rachel and her family raise awareness on MS-related issues impacting minorities and underrepresented groups; her husband, Kevin, often joins her on advocacy visits, and one of her three grown children, Ashley, works in government relations for the Society in Virginia.

VOLUNTEER

RECOGNITION

Page 25: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

FUELING IMPACT 23

Scott M. Crawford, PhDAlabama – Mississippi

After receiving a diagnosis of primary-progressive MS in his early 30s, Dr. Scott Crawford left his budding

career as a neuropsychologist to move closer to family back home in Jackson, Mississippi. He quickly became a powerful disability rights activist, motivated by personal experience with local lack of compliance with the Americans with Disabilities Act and limited accessible sidewalks and transportation, as well as by often unaffordable treatment for MS and unmet durable equipment needs. He summarizes his view towards life, MS and activism with, “It’s not what happens to us, it’s what we do with it.” Scott’s advancement of the MS movement’s advocacy priorities has been transformational in his community and at the state and federal levels. Scott is also an outstanding speaker, fundraiser and volunteer leader with the Society.

Philip Posner, PhDNational Capital

After his confirmed diagnosis of MS in 1999, Dr. Philip Posner continued working – as a university professor, teacher

and researcher – through his partial retirement and move to the Washington, D.C. area in 2004. Since moving Phil has volunteered as a leader with the Society’s peer connections program and joined the Virginia Government Relations Committee. He volunteers as an advocacy ambassador at Walk MS and health fairs, and is vice chair of the Washington Metropolitan Area Transit Authority’s Accessibility Advisory Committee. Phil serves as a reviewer for the Congressionally Directed

Medical Research Program and Patient-Centered Outcomes Research Institute, and as a patient advisor for U.S. Food and Drug Administration drug and device panels. His career in medical education and research combined with his location and passion to do something about MS make him a powerful MS activist.

Mary Reed SpencerMid America

When Mary Reed Spencer was 12 years old, her mother was diagnosed with MS. Passionate about the mission,

Mary began volunteering with the Society in 1970 when she conducted a research survey of people with MS with the Kansas Nursing Association. She organized the first MS READaTHON in the Topeka, Kansas, area in 1978. From growing the Kansas MS Caucus to hand-delivering welcome letters to new MS Caucus members, and from securing speakers for various events to speaking herself, Mary’s passion for and leadership in activism has flourished. She has held numerous leadership positions on boards and committees, and her unflagging energy and commitment have inspired many others to join the movement. She remains highly involved in Bike MS, Walk MS, connection groups, State Action Days and more.

Page 26: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

24 2014 SOCIETY LEADERSHIP CONFERENCE

Robin SteinwandGreater New England

Diagnosed with MS in 2000, Ro b i n S te i n wa n d i s a passionate MS activist leader with particular interest in

access to healthcare. Her lengthy career in public health and experience addressing rural care barriers provides a rare global perspective. She compellingly testified before the Maryland and Maine legislatures about the need to limit out of pocket cost for specialty-tier drugs, and shared her story with the New York Times to help others understand this critical issue. Robin also tells the stories of other people with limited incomes or other barriers to healthcare who may be “falling through the cracks” of our health and human services systems. She encourages fellow volunteers to speak up and share their viewpoints to educate and appeal to lawmakers – wherever they fall on the political spectrum. Appointed to the Society’s State Activism Council in 2013, Robin provides ongoing strategic leadership.

Funding the Mission Honorees

Anne AllenPacific South Coast

Diagnosed with MS in 2006, Anne Allen registered for her first three-day 50-mile Challenge Walk MS in 2008

at the suggestion of physical therapist and friend, Sylvia. “Sylvia saw an advertisement and said, ‘why don’t we do this?’ and I was like, ‘OK.’” It is this same laidback attitude with which Anne navigates her journey with primary-progressive MS. As a self-described realist, she admits, “I know my MS is very progressive, but that’s okay. This disease only defines you if you let it, and it’s important to me that I do what I can… to find a cure and new treatments.” Anne completed her seventh Challenge Walk MS in September, and her team, Hurt So Good! also participates in Walk MS and Bike MS. To date, she has raised nearly $700,000 including $75,000 for a local respite care program to help provide temporary relief to family caregivers.

Brent CurranGreater Northwest

In 2002, when Brent Curran was attempting to recruit for his Bike MS team, he illustrated the challenges

of MS by describing his uncle’s transition from cruising on a single-speed Schwinn bike to relying on a wheelchair. Brent’s friend challenged Brent to ride that Schwinn, “Big Red,” in Bike MS. Brent felt that it would be easier to do Bike MS on a single-speed Schwinn than to live with MS – and now you can find Brent proudly crossing the Washington Bike MS finish line on Big Red each

VOLUNTEER

RECOGNITION

Page 27: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

year. He mentors many new team captains and uses Big Red to inspire action and bring hundreds of others to the MS movement. His team has raised nearly $1 million over the past 12 years, and Brent’s involvement with the Society has expanded to include everything from serving on the Board of Trustees since 2008, to community engagement in outlying territories, to growing Bike MS.

Peter GoettlerNew York City – Southern New York

For more than a decade, Peter Goettler has been a leader in the MS movement

in honor of his wife, Cynthia, who lives with MS. As a high-level international executive at Barclays Capital in New York City until his 2008 retirement, Peter made a conscious decision to direct most of his giving through Bike MS – in order to motivate others to give. He never wanted staff at Barclays to feel pressured to give – he feels that philanthropy is a very personal endeavor – so he encouraged giving by personally matching the pledges raised by the Barclays Capital Chain Gang Bike MS team. The team reached an elite fundraising team status, one that it maintains to this day under the leadership of the team captain that Peter mentored before his retirement. Peter’s leadership continues as chair of the Board, and his participation in Bike MS every year.

Perry Ann JeveliNorthern California

Diagnosed with MS 19 years ago, Perry Ann Jeveli took hold of her destiny and began fundraising. What

started with friends and family is now Northern California’s highest fundraising Walk MS team,

“Pear’s Pack,” which includes corporate sponsors, foundation donors and community leaders. Perry Ann has mentored and motivated other top-fundraising team captains and influenced more than $500,000 in research funding. Perry Ann uses media and marketing to extend her reach past her immediate network – because of her positive outlook on life, she connects easily with people. Perry Ann is also a proactive and strong advocate and ambassador for others living with MS, the Society =and the MS movement; she is considered the “go to” volunteer in the Bay Area as she actively inspires others, connecting with them and deepening their relationship with the Society and the MS movement’s progress.

Robert KeeleyGreater New England

As founder and president of Diversified Project Management , Robert Keeley works with many

customers and vendors from companies of all sizes. After his mother’s diagnosis with MS in 1985, Bob turned his company’s annual golf outing into a fundraising event, raising more than $750,000 for the Society over the past 18 years. In 2006, he joined the Board of Trustees and has become a significant voice; he communicates with his network and others about MS, helping them understand the disease and the role of the Society in ending it. As a generous monetary donor who also asks others to give, Bob leads by example. His sense of humor, energy and drive are impressive and infectious, but he doesn’t pressure people to give or help – instead they are grateful for the opportunity he presents. In the words of the Greater New England chapter president, “It’s hard to say no to Bob Keeley, and he knows it.”

FUELING IMPACT 25

Page 28: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

26 2014 SOCIETY LEADERSHIP CONFERENCE

Ann LarmoreIndiana State

Since Ann Larmore’s diagnosis of MS in 2002, she has been a catalyst for connections in the MS movement. She

lives and works as an information technology professional in the community where she grew up, where her passion and unflagging efforts really do make life brighter for people with MS. Her initial volunteer efforts as a Walk MS participant raising $2,000 for the Society quickly expanded to a deeper commitment, resulting in raising nearly $250,000 over the last eight years for MS research – through an entrepreneurial third-party auction event she created. No matter how Ann is raising funds, she does the lion’s share of asking for sponsorships, selling tickets, and obtaining auction item donations, in-kind solicitations and more. She attributes her fundraising success and the positive aspects of her journey with MS to her amazing family and friends with the famous Beatles lyrics, “I get by with a little help from my friends.”

JR PaterakisMaryland

JR Paterakis is a member of one of Baltimore’s most influential families. Taking the torch from his father,

John Sr., who was active with the Society in the 70’s and 80’s, JR leverages his vast network of

personal and business relationships to open doors for the MS movement. While JR fundraises across many events, he is most passionate about the Dinner of Champions, raising more than $4 million over the past 20 years. He has been a trustee on the Maryland Board since 1995 (including terms as Chair and Vice Chair), has served on the Governance Committee for more than a decade, and has chaired the Dinner of Champions Committee for more than 20 years. He shares his talents and connections, and challenges the board and committees to do more, to dig deep and to give more.

Health Professional Honorees

Bruce A. Cohen, MDGreater Illinois

A long-time thought and action leader in the world of MS clinical care, Dr. Bruce Cohen has been a

driving force in the development of national MS clinical care guidelines, and in establishing a model for clinical partnerships, Partners in MS Care. His clinical practice and counterpart in the Rehabilitation Institute of Chicago created the prototype comprehensive and coordinated MS program in 1986, before the advent of disease-modifying therapies. While serving as the director of a large center for comprehensive MS care at Northwestern University Medical Center, Dr. Cohen still makes time to attend local education programs, and participate in several Society committees, and the American Academy of Neurology’s MS section executive committee.

VOLUNTEER

RECOGNITION

Page 29: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

FUELING IMPACT 27

Jody Corey-Bloom, MDPacific South Coast

Dr. Jody Corey-Bloom has been treating people with MS for more than twenty years; including the most

difficult cases and those without means.mShe strives to elevate understanding of MS in the community, including 14 years of leadership of the local MS Research Symposium for people with MS and neurologists, as well as outreach to local neurologists. Her efforts have resulted in new relationships for the Society, more referrals to MS-specific healthcare, great confidence from local neurology partners, and much more. Dr. Corey-Bloom has been the principal investigator on more 40 clinical trials for the treatment of various neurodegenerative disorders, has served as editor of Adult Neurology, and is currently professor of neurosciences at the University of California, San Diego, where she served as long-time director of the MS Center; she is co-chair of the Pacific South Coast Clinical Advisory Committee, and an active member of the Board of Trustees.

Tova Epstein, LCSWNew York City – Southern New York

Since becoming the clinical social worker at the Corinne Goldsmith Dickenson MS

Care Center at Mount Sinai Hospital in 2001, Tova Epstein has volunteered her time and professional expertise to the MS movement. She shows a powerful commitment to providing the best service to people living with MS, is their fierce advocate, and demonstrates an ongoing desire to educate other professionals about the needs of people

living with MS, and the concepts and benefits of comprehensive care. Tova presents at local programs for people with MS and professionals alike, offering her substantial clinical expertise in a down-to-earth style. As she serves individuals with MS, she seeks to establish new community resources for all. Beyond her healthcare-related contributions, Tova has co-chaired her Center’s successful Walk MS team since its inception in 2003.

Lily Jung Henson, MD, MMM, FAANGreater Northwest

Dr. Lily Jung Henson is Vice President of Medical Affairs at the Swedish Ballard

campus and the new Medical Director of the Swedish Neuroscience Institute at Ballard. She has a large MS practice and is a principle investigator in many MS clinical trials. Since 2004, Dr. Jung Henson has been a member of the Greater Northwest Clinical Advisory Committee, leading and participating in initiatives including the Regional MS Summit, the Medical Student Mentorship Program and the Healthcare Provider Engagement Advisory Group. In addition to connecting her patients with the Society, volunteering and engaging the medical community, Dr. Jung Henson involves her professional network in Walk MS and has started a Bike MS team – raising nearly $500,000 to date. Dr. Jung Henson serves on the Greater Northwest Board of Trustees, and National Board of Directors and Federal Activism Advisory Committee. She maintains her sense of humor even during complicated situations, which makes her easy to work with and well-respected.

Page 30: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

28 2014 SOCIETY LEADERSHIP CONFERENCE

VOLUNTEER

RECOGNITION

Lizbeth Najm, LVNPacific South Coast

From speaking at events about the importance of carepartner self-care, to easing isolation of individuals

living with progressed MS through “angel” visits, to single-handedly building, coordinating and sourcing supplies for the 12-member nurse support team for the three-day Challenge Walk MS, Lizbeth Najm is dedicated to the MS movement. For 26 years Liz has volunteered with the Society in honor of her father who lived with MS for more than two decades. She is a trustee on the Pacific South Coast board, top fundraiser and captain of team “Leggin for Larry” which has raised more than $100,000 over the years. Liz builds lasting relationships with businesses that support various MS events throughout the year. In addition to the Challenge Walk MS nurse team, affectionately known as the “Blister Busters,” Liz coordinates medical care at nearly every local MS event. Liz works as a surgical nurse and operating room materials coordinator at Whittier Hospital Medical Center.

Cindy Phair, RN, MS, MSCNUpper Midwest

Cindy Phair has devoted her career to helping people with MS live better lives on all fronts — not only

providing top-notch clinical care, but offering education, support and leadership. She shows tremendous passion for helping people with MS

better understand and manage their disease, and for helping professionals to provide the best possible care. Cindy has given myriad lectures about MS and management issues associated with neurologic disorders to patient and professional audiences. She has held clinical and academic positions at several institutions, served on national and international nursing boards and organizations, and is a contributing author to a number of books and journals. For three decades, Cindy has been a devoted volunteer for Society programs, and has raised critical funds and awareness through Society events, like Walk MS and the On the Move luncheon.

Nilay Shah, MDNew York City – Southern New York

As a practicing neurologist, Dr. Nilay Shah saw many people with MS in an area

that had limited access to care. In 2004, he began regularly attending a Society self-help group to answer questions about approved treatments for MS. Time with an MS neurologist proved beneficial to group members, as most did not travel to visit a comprehensive MS care center. Dr. Shah completed the Special Symposium of the MS Comprehensive Treatment Training Program, which combined self-study curriculum with intensive, onsite clinical rotations. He is a founding member of the New York Neurologic Society and a member of the New York City – Southern New York Clinical Advisory Committee. Dr. Shah has made many presentations to people with MS and healthcare professionals and is an MS activist. He has made an incredible impact in the Hudson Valley area with his strong desire to help those in need, and solid knowledge base.

Page 31: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Programs and Services Honorees

Jeffery D. Haines, PhD New York City – Southern New York

Dr. Jeffery Haines is a post-doctoral research fellow – with research focus on

mechanisms of remylination and axonal repair – whose volunteer efforts have had enormous influence on the way the Society approaches research education and awareness locally. His personable speaking style and ability to make research understandable to professional and lay audiences has helped hundreds of constituents understand more about MS research and Society research funding initiatives. Dr. Haines’ commitment to the Society, involvement with the New York City – Southern New York Government Relations and Clinical Advisory Committees, and specifically his design and implementation of a program to attract students to become the Next Generation of MS Researchers, has shown him to be a remarkable mentor and a strong advocate for the Society’s key strategic goals.

Michele IslasNational Capital

Michele Islas first connected with the Society after her husband was diagnosed with MS; it was through their

participation in Walk MS that Michele recognized the need for programs for families with young children. Michele is a devoted wife, a mother of four, and has been a dedicated volunteer since 2005. For the past five years, Michele has been a member of the National Capital Programs Committee and

instrumental in developing and implementing both Family Day programs and Walk MS Experience Areas. Michele shares her own experiences to connect with other families and inspire them to tell their own stories. In her words, “MS is uncertain, scary, and frustrating but certainly not hopeless. It’s my wish, that through my volunteer work, I can give others that hope.” Her tireless devotion and commitment to the Society’s mission expands beyond programs to include fundraising and ongoing outreach to families.

Beth JensenUpper Midwest

Beth Jensen is a long-time group leader for the St. Paul “Care-to-Share” MS group and a member of the

area coordinator team. She recognizes the value of clubs and groups and is deeply committed to helping people affected by MS connect with one another, with the Society, and with information and resources to live fully and well with MS. Beth has been an information and referral volunteer and was among the first local Tell-a-Peer volunteers, connecting one-on-one to offer support and help address MS-related questions and concerns. Beth has given her time and expertise to the Society for more than 25 years. She’s a talented, thoughtful, caring and dedicated leader who involves and effectively recruits and engages others to volunteer their time, talents and enthusiasm in support of Society programs and fundraising events like Bike MS.

FUELING IMPACT 29

Page 32: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

30 2014 SOCIETY LEADERSHIP CONFERENCE

VOLUNTEER

RECOGNITION

Katherine MackintoshGreater Carolinas

Seeking information, KathyMackintosh connected withthe Society just one month after her diagnosis of MS

in 2002. She immediately decided she wanted to “do something about MS.” Her volunteer work in Walk MS and Bike MS, coupled with a new focus on health and wellness – which included losing more than 100 pounds and beginning a new exercise regimen at age 54 – propelled her down a path focused on emotional and physical health. Kathy is passionate about educating others, and has used her expertise in health coaching and her skill in public speaking to teach others living with MS about the disease, provide key updates as a Research Advocate, and raise awareness about MS. She inspires others like herself who have been diagnosed with MS, as she keeps moving as a nine-time Challenge Walker, a volunteer in Walk MS and Bike MS, and fundraiser.

Kelly Malucha, RNWisconsin

Because her sister has lived with MS for more than 30 years Kelly Malucha approaches MS nursing with

her head and her heart. She helps patients and their families learn about and successfully navigate the

network of resources available to them – particularly in financing their medical and prescription needs. Kelly is a passionate spokesperson for the MS movement, representing the Society with warmth, enthusiasm and humor during presentations on MS-related topics ranging from treatment options to successful DIY fundraising to her own personal story. She rallies the rest of the Center for Neurological Disorders staff around fundraising and awareness initiatives, has met with government officials about Medicaid, participates in Walk MS, Bike MS and Challenge Walk MS, and is always willing to share her ideas with others to help them reach their fundraising goals.

Maxine D. MichaudGreater New England

Now-retired occupational therapist assistant, “Max” Michaud, has steadfastly supported the Society for

more than 20 years. Max drives to visit people with MS who may be feeling isolated, provides them with transportation to medical appointments as needed, and brings others with MS to take part in a local assisted skiing program. She is often sought out for peer support through phone calls and emails from across the state, and started and leads one of the largest and most popular self-help groups in the area. Max volunteers at nearly every Society program and event and talks about the MS movement in her community, making sure that every person she connects with knows how they can be involved.

Page 33: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Denise SavareseGreater Delaware Valley

For more than 20 years, Denise Savarese has risen to meet the Society’s every local need by offering her

time, network, poise and caring attitude. She is resourceful in identifying and utilizing community contacts and shares this knowledge regularly with her peers. Denise has led or co-led several support groups, organized advocacy projects (recruiting more than 40 new MS activists), mentored newly-diagnosed individuals, hosted MS Service Days, rallied volunteers, organized health fairs and captained Walk MS teams. More than 400 people have routinely attended her support group, the group is known for its welcoming embrace of new members, and continued visits and connections to members who can no longer attend. Though she rarely takes credit for her efforts, everywhere that Denise goes she is an ambassador for the MS movement and a truly dynamic leader.

Scientific Researcher Honorees

Simon G. Gregory, PhD, BAScGreater Carolinas

Dr. Simon Gregory’s work in genetics has led to exciting advances and opened up a new field of research

with respect to how the IL7R contributes to the development of MS; this area of research holds promise for new treatment strategies. Dr. Gregory’s contributions to MS research and his influence in the scientific community have been enhanced by

his willingness to volunteer time and expertise over the past seven years. Dr. Gregory takes great interest in educating people about advances in MS research, such as providing updates to people affected by MS – including the Greater Carolinas young-adult group, Modern Society, – the Greater Carolinas Board of Trustees, and the Clinical Advisory Committee. He has also engaged donors and encouraged young researchers to focus on MS. He is currently Associate Research Professor in Molecular Genetics and Microbiology at Duke University School of Medicine.

Robert W. Motl, PhDGreater Illinois

Dr. Robert Motl has been a leading researcher in the field of exercise and MS since his first study was funded by

the Society in 2003. He has devoted his efforts to substantiating the impact of exercise through his research lab and in training rehabilitation specialists. Dr. Motl recently established the Exercise Neuroscience Research Laboratory (ENRL) where state-of-the-art lab equipment is used for exercise testing and training for people living with MS. He is mentoring a new generation of young researchers in exercise neuroscience with five PhD students, one post-doctorate research associate and 10 undergraduates all working in the ENRL. Dr. Motl is Associate Professor in the Department of Kinesiology and Community Health at the University of Illinois Urbana-Champaign, as well as a regular participant and supporter of Walk MS.

FUELING IMPACT 31

Page 34: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Alexander NgWisconsin

As an associate professor at Marquette University and the Medical College of Wisconsin, and a Fellow of the American

College of Sports Medicine, Dr. Alexander Ng focuses his research on symptomatic fatigue in chronic disease with an emphasis on MS. He is enthusiastic about new research ideas and improving quality of life for people with MS, which is apparent as he looks at various forms of exercise, such as ballroom or social dancing, and its application in MS. For the past 14 years, Dr. Ng has volunteered with the Society including holding research tours for the Wisconsin Board of Trustees, donors and other key stakeholders, as well as hosting presentations about exercise and research in MS. In his spare time, he works as a clinical exercise physiologist through the nonprofit “Can Do MS.”

Amy Lovett-Racke, PhDOhio Buckeye

Dr. Amy Lovett-Racke has been a leader in the MS research revolution, focused on immunology and MS,

specifically the study of disease pathogenesis and the development of novel therapies. She and

her husband, Dr. Michael Racke, MD, have served as mentors for many students, residents, fellows and faculty. Dr. Lovett-Racke has volunteered on Society committees and has received awards for her work including the Society’s Harry Weaver Neuroscience Scholar Award. This award was also given to her husband, making them the only husband and wife team to have both received that honor. Dr. Lovett-Racke currently serves as an Associate Professor of Microbial Infection and Immunity at The Ohio State University Wexner Medical Center.

Michael K. Racke, MDOhio Buckeye

A Society fellow in the late 1980’s, Dr. Michael K. Racke has dedicated his career to helping people living with

MS. He is known for his research in immunology and MS, he and his wife, Dr. Amy Lovett-Racke, PhD, were the first to study fumarates in the animal model of MS, and have led the way in examining the immune response in patients with MS. Their work has resulted in clinical trials for medications and treatments. Over the past 25 years, Dr. Racke has volunteered on many Society committees and received numerous awards. Dr. Racke is currently Professor of Neurology, Neuroscience, and Molecular Virology, Immunology, and Medical Genetics, and previously served as Chairman of Neurology at The Ohio State University Wexner Medical Center.

VOLUNTEER

RECOGNITION

32 2014 SOCIETY LEADERSHIP CONFERENCE

Page 35: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

CIRCLE OF INFLUENCEMembers of the National MS Society’s Circle of Influence demonstrate their commitment to a world free of MS through financial leadership, extraordinary generosity and enduring trust. Each individual, corporation, foundation or team has given or raised $10 million or more to impact the lives of people living with MS.

CIRCLE OF

INFLUENCE

FUELING IMPACT 33

Bayer HealthCare is focused on providing access to medication to people independent of their origin or income. Bayer has been engaged with the MS Movement for over 20 years and raises funds for the Society through Bike MS and Walk MS, corporate fundraising teams and provides support for programs and services across the country. Bayer was an instrumental partner in the MS Technology Collaborative – an initiative with the Society and Microsoft that explored how people with MS use technology to connect.

Biogen Idec’s research efforts are focused on developing therapies for patients with serious illnesses that currently have few. For nearly 20 years, Biogen has supported the Society and MS community by providing grants to fund educational programs and services; sponsorship of Society Walk MS, Bike MS and MuckFest MS events and through corporate fundraising teams. In 2011, Biogen partnered with the Society and others to develop ‘Live Fully, Live Well’ a program designed to take a holistic approach to living well with MS.

For the 15th consecutive year, BP will serve as title sponsor of the 2015 BP MS 150 Houston to Austin bike ride. Team BP maintains the National MS Society’s largest cycling team in the nation with an average of 700 cyclists participating annually. Since 2001, Team BP has raised more than $14 million through the BP MS 150 alone. Each year since 2008, Team BP has generated more than $1 million in fundraising annually.

EMD Serono/Pfizer strives to create value and benefit to patients by transforming medical science into breakthrough solutions. EMD Serono/Pfizer has been committed to people with MS for over 20 years, supporting the Society through corporate team participation in Walk MS, Bike MS and MuckFest MS, as well as ongoing educational grants for Society programs and services across the country. EMD Serono and the Society partnered to create ‘Real Talk, Real Answers’ – a live webcast program that engaged people with MS in their 20s and 30s.

Teva Neuroscience is committed to making quality healthcare accessible. Teva has been a partner to the MS community for over 20 years, supporting Walk MS and Bike MS events through sponsorships, raising funds through corporate teams and providing educational grants for Society programs and services. For many years, Teva has been supporting the Society’s scholarship program – helping qualified students diagnosed with MS or who have a parent with MS achieve their dreams of going to college.

2014HONOREES

Page 36: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

34 2014 SOCIETY LEADERSHIP CONFERENCE

CIRCLE OF

DISTINCTION

CORPORATIONS

American Express

Aon Benefield U.S.

Autoimmune and Rare Diseases Business of Mallinckrodt Pharmaceuticals

Bimbo Bakeries USA

Comcast

Ernst & Young

Harmon City

HealthSouth Corporation

International Paper

McDonald’s Corporation

Noble Energy, Inc

Pee Dee Street Rodders

Petroleum Marketers

Point B

UBS

Verizon

INDIVIDUALS AND FOUNDATIONS

Anonymous

Mr. & Mrs. Vaughn L. Beals

Don Fraser

Freddie Mac Foundation

Friends of the National MS Society

Mr. and Mrs. Peter Goettler

Eugene and Emily Grant Family Foundation

The Hagan Family

Mary J. HutchinsFoundation, Inc.

Mr. Phil G. McCartheyand Family

M F H Missouri Foundationfor Health

The Pennsylvania Order of the Eastern Star

The Popper Family

Rosanne & Louis Ross

Tuffli Family Foundation

Timothy M. Zulick

TEAMS

Baker Hughes

Bechtel Cyling Team

CH Robinson

Denim Riders

Left Hand Brewery

Liam’s Lucky Charms

Selma Cyclepaths

Spoons N Spokes Team

Team BHP Billiton

Team Cameron

Team Hertz

Team Hess

Team In Motion

Team Kinder Morgan

Team Michelob Ultra

Team MRE

Team Rocket Sprockets

Team Susman Godfrey

Team Toyota

CIRCLE OF DISTINCTIONMembers of the National MS Society’s Circle of Distinction demonstrate their commitment to the Society’s mission through extraordinary financial leadership and generosity. Each individual, corporation, foundation or team has given or raised $1 million or more to bring us closer to a world free of MS.

2014HONOREES

Page 37: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

CORPORATIONS

AccentureAcorda Therapeutics AetnaAlliance Energy Anheuser BuschBank of America Bayer HealthCareBiogen IdecBlue Cross Blue ShieldBP Cargill Christopher & BanksClear Channel

Cox EnterprisesDeloitteEMD Serono/PfizerEnterpriseFedExFidelityGE Genentech GenzymeGoldman SachsIBM J.P. Morgan ChaseKPMGKroger

Macy’s

Merck

Microsoft

Morgan Stanley

Novartis Pharmaceuticals

Pepsi Cola Bottling

Petroleum Marketers, Inc

Pure Protein

Sam’s Club

Teva Neuroscience

Travelers

Wells Fargo

Wieden & Kennedy

Anonymous

Mr. and Mrs. Charles Barancik

Mr. and Mrs. Abbott Buegeleisen

CFMS Fund Foundation

Mr. and Mrs. John Clay

Filomen M. D’Agostino Greenberg Foundation Corp.

Mr. and Mrs. Merwyn Dan

Friends of Multiple Sclerosis Society

Gautreaux Family Foundation

The Gidwitz Family

The Sol Goldman Charitable Trust

Christian and Liliane Haub

Hawn Foundation Inc.

Peter F. Herschend

Conrad N. Hilton Foundation

Mr. Ralph Holden

Robin Kemper and Diane Goldman Kemper

Phil Keoghan

Mr. and Mrs. James Knowles

Dennis Kuester

Mr. and Mrs. Michael Leeds

Elissa Levy and MS Hope for a Cure

Mr. A. Scott Logan

Mr. Fred Lukas

The Andrew J and Joyce D Mandell Family Foundation

Dr. and Mrs. Francis Manlove

INDIVIDUALS AND FOUNDATIONS

2004-2013HONOREES

FUELING IMPACT 35

Page 38: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

CIRCLE OF

DISTINCTION

INDIVIDUALS AND FOUNDATIONS CONT.

Donald C. McGraw Foundation

The Ambrose Monell Foundation

Mr. and Mrs. John Moores

Mr. and Mrs. Dwight Morris

Dr. and Mrs. Michael Morykwas

The O’Donnell Family Foundation

Mrs. Barbara R. Palmer

Mary Parker

In loving memory of Julie P. Power, the Power Family and the Kenrose Kitchen Table Foundation

Mr. and Mrs. Louis Rauh

Scott Canepa CharitableSupporting Organization

Mr. Bob Schmidt

Mr. and Mrs. Richard Slifka

Mr. and Mrs. Richard Slone

Souers Charitable Trust

Ms. Elizabeth Stein

Mr. Jim Tidwell

Ms. Flora Thornton andMr. Eric Small

TEAMS

Anadarko

Barclays Chain Gang

Team Bike Mart

Centerpoint Energy

CGG

Chevron

Chuck’s Athletic Supporters

Coca-Cola

ConocoPhillips

Team Disney

Team Donaldson

Donato, Minx & Brown

Dow Chemical Company

Team Engleman

EOG Resources

ExxonMobil

Feisty Devils

FMC Cyclers

Ford

Frito Lay Cheesy Riders

Fugro

Gardere

General Motors

Giant Foods

Team Gillespie

Halliburton

Team Harmons

Houston Builders

Houstonian Hammerheads

Team HP

Team J & J

J Walkers

Jersey’s Team

Kaldi’s Coffee

Lockheed Martin

Lyondell Bassell

Marathon Oil

Memorial Herman

Team Momentum/Bill’s Backers

MS Great 8

Mutual of America

National Oilwell Varco

Nestle - PowerBar

PwC

RawHinies

Real Estate Riders

Saint Arnold’s Bike Team

Team SDCCU - San Diego County Credit Union

Schlumberger Cycling Team

Team Shell Cycling

Sonic Streamers - Sonic Foundry

Spin Inergy - Inergy Services

Team St. David’s

Team Stay Fit @ Hyatt

Team Sugar Bee

Team Sun & Ski Sports

Team Texas Children’s

Team United We Ride

United Airlines

University of Pennsylvania Health System

Valero Energy Corporation

Western and SouthernFinancial Group

YMCA

Zimmerman Advertising

2004-2013HONOREES

36 2014 SOCIETY LEADERSHIP CONFERENCE

Page 39: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

CHAIRMAN’S

CIRCLE

FUELING IMPACT 37

CORPORATIONS

Abbott Laboratories

Altria

Amalgamated Transit Union

AT&T

Bloomberg

Boeing

Booz, Allen & Hamilton

Citigroup Payment Services

Crawl for the Cure

David Allen Company

Delaware Park

Deutsche Financial Services

Diversified Project Management

Express Scripts

GNC Nutrition Center

Great West

Haggen Food & Pharmacy

HP

Magneco Metrel

Medtronic

Mercedes-Benz

Mutual of Ohio

Newmont USA Limited

Noble Energy

PNC Institutional Investments

Praxair

Prudential Securities

Regions Financial

Revlon

Revolution Studios

Rexall Sundown

Secor Group

Sony

Structure Tone

Subaru of America

The Denver Post

The Pantry

The Starr Foundation

Time Warner

Twentieth Century Fox

TXU

Warner Music GroupService

CHAIRMAN’S CIRCLEMembers of the National MS Society’s Chairman’s Circle demonstrate their commitment to the Society’s mission through exemplary financial leadership and generosity. Each individual, corporation, foundation or team has given or raised $500,000 or more to bring us closer to a world free of MS.

2014HONOREES

Page 40: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

INDIVIDUALS AND FOUNDATIONS

Mrs. Lari J Ainsworth Albert’s JewelersMrs. Nancy AlvordThe Annenberg FoundationBrodsky Family FoundationMrs. JoAnn Cantalupo Change A Life FoundationMrs. Laura CohenDorothy and Sherrill Corwin FoundationCrown Family Philanthropies (Arie and Ida Crown Memorial) Mrs. Roxanne E. DavisThe Ford FundMrs. Bianca Fraser-JohnsonThe Greenhall FamilyKen HoexterThe Helen HoffritzCharitable TrustPerry Ann JeveliMr. William R. KlesseMr. and Mrs. Eli LipconLP Brown FoundationMr. Charley D. LongMr. and Mrs. William J. MarracciniMars ResearchMr. Douglas C McAllister Mitzvah MilersMr. and Mrs. Bryan Morgan

Mr. and Mrs. David PerrenMr. Doug Quick andMs. Janine VanierRegal FoundationMr. and Mrs. Fred RothmanMr. Anthony RubinoMr. and Mrs. Chad SmithMr. and Mrs. David SchulmanMr. John and Mrs. Theresa StewartMr. Stephen D SusmanMr. Ely TamaTykeson Family Charitable TrustMr. Dave Van Der LindenMr. Robert and Mrs. Mary ZirlinRubin & Gladys Wollowick Family FoundationWeingart FoundationWilliam T. Morris FoundationziMS Foundation

TEAMS24 Hour Fitness / Well SpoknAnthem Blue Cross RebelsBBC CharteringCalpine Cycling TeamCampbell’s SoupCarney MenCredit SuisseD & Q Bike ShopDeloitte DifferenceDick and Lynn GordonDirect Energy/HAAExterranHouston BuildersHoward’s TeamLime Rock/Tesco CorpLloyd’s LagersLocktonLockton InsuranceMonsantoMustang/Wood Group

Norcal Street Walkers WithGood CarmaNorthrop GrummanNRG EnergyOl’ Army CyclingPep’s PeddlersPlano CyclingProfessional Women and Multiple MilersSpectra EnergyStarbucksStatoilTeam ApacheTeam Bass Ass CoffeeTeam BassoTeam CanterburyTeam CBCTeam ChevronTeam EricaTeam EverstTeam FLHTeam FluorTeam GLOTeam Granit-PetrobasTeam Katz’s DeliTeam KPMGTeam Menstrual CyclesTeam NewfieldTeam OxyTeam PricewaterhouseCoopersTeam SWNTeam TacodeliTeam TotalTeam Velo ValeroTeam Velox RotaThe Cure - S’Myelin BriteTime WarnerToyotaTransocean, Inc.Urban Bicycle GalleryVitamin ShoppeWinston Salem Flyers

38 2014 SOCIETY LEADERSHIP CONFERENCE

CHAIRMAN’S

CIRCLE

Page 41: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

FUELING IMPACT 39

SPECIAL

GUESTS

Cyndi Zagieboylo became president and CEO of the National MS Society in 2011. She began her Society career in 1985 and has had many responsibilities and positions in the Society. Cyndi has worked with every CEO of the organization, including the National MS Society founder, Sylvia Lawry, and has made achieving the Society mission her life’s work.

Cyndi serves on the Society’s National Board of Directors as CEO and president, on the National Health Council CEO group and Board of Directors, and on the Multiple Sclerosis International Federation CEO Advisory Group and Board of Directors. She is a founder of the International Progressive MS Alliance, which was launched in 2013, and she provides leadership as chair of the executive committee. The Alliance was formed to expedite the development of therapies for progressive MS through connecting resources and experts around the world.

Born in Norfolk, Massachusetts, Cyndi received her bachelor’s degree in rehabilitation counseling and psychology from Springfield College, followed by a master’s degree in social psychology from the University of Connecticut. She lives in Honeoye Falls, NY.

Cyndi Zagieboylo

President & CEO,National MS Society

Keynote Speaker

Page 42: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

40 2014 SOCIETY LEADERSHIP CONFERENCE

Eli Rubenstein is chair of the National Board of Directors. He has been a member of the board since 1998; chaired the 2011 CEO search committee; served on the 2004 CEO search committee; and chaired the 2004 review of national leadership task force. In 2008, he served on the charting our future task force and in 2014 on the Strategic Plan Development task force. As chair of the board, he serves ex off icio on all board committees and chairs the executive and compensation committees.

Eli has been a member of the Greater New England Chapter since 1980, serving as board chair from 1994 - 1996. He received the Norman Cohn Hope Award in 1998. In 2010, he joined the board of the Multiple Sclerosis International Federation. In 2013, Eli was the Greater New England Milestones Gala honoree.

Eli received his B.A. degree from Columbia College and his J.D. from New York University School of Law. He is a partner in the law fi rm of Goulston & Storrs in Boston. His community involvement includes the Board of Visitors of Dimock Community Health Center and member of the board of the American Jewish Committee, Massachusetts Chapter.

Leslie Crutchfi eld is an author and senior advisor with FSG, a mission-driven strategy consulting fi rm that helps foundations, corporations, governments and nonprofi ts worldwide solve pressing societal problems.

Leslie and FSG managing directors John Kania and Mark Kramer co-authored Do More Than Give: The Six Practices of Donors Who Change the World; Leslie previously co-authored Forces for Good: The Six Practices of High-Impact Nonprofits, recognized by The Economist on its Best Books of the Year list.

Leslie was formerly an Ashoka managing director, and she cofounded and ran a national nonprofit social enterprise. She has contributed to Fortune, Forbes, The Chronicle of Philanthropy, and Stanford Social Innovation Review, and has appeared on programs such as NPR and ABC News.

Leslie has served as a trustee of SEED Foundation and Kiva, and was a Crossroads Africa volunteer. She holds an MBA and BA from Harvard, and resides in the Washington, D.C. region.

Eli Rubenstein National Board ChairNational MS Society

Keynote Speaker

Leslie Crutchfi eldKeynote Speaker

SPECIAL

GUESTS

Page 43: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

FUELING IMPACT 41

For nearly two decades, Denise Belle has been determined to leave her legacy for equality towards education, health care, environment, and the workforce. She is known for her unwavering spark of optimism, exuberant attitude and passion for creating opportunities for individuals to rely on their innermost strength that will ultimately drive them to never give up. She knows first-hand the impact of maintaining such actions because she is reaping significant influence on her personal life since being diagnosed with MS on October 21, 1996.

While medical professionals suggested Denise rethink the idea of earning her undergraduate degree because of her frequent excursions to the hospital, she defied the odds and continued to fulfill her promise. Denise has earned a BS degree in Community Health Education from North Carolina Central University, a MPH degree from the University of North Carolina at Greensboro and is presently pursuing a PhD in Public Health from Walden University. Her current professional

role as the Director of Community-Based Outreach Programs with Rural Health Group, Inc. allows her to tap into and serve the needs of a multitude of people, especially rural, underserved minorities. RHG is a non-profit, federally qualified community health center (conglomerate of 12 clinics) dedicated to serving everyone in Northeastern NC (6-county region) providing exceptional medical, dental, behavioral health, pharmacy, health education, nutrition, WIC and case management services; all irrespective of the client’s ability to pay for services. Denise is an active volunteer with the Greater Carolina Chapter of the National MS Society. She is a member of three Society Advisory Councils (National African American Advisory Council, National Programs and Activities Council, National Federal Activism Advisory Committee) and has been called upon to serve on various Society subcommittees addressing issues surrounding rural health.

Denise credits her tenacity to her beautiful mother whom she cites as her hero. She also shares her life with William, her ideal life companion, her four-legged “son” Jackson, their dog, and a cluster of friends/family who have served as her rock whenever she needs to lean on them. Ms. Belle is grateful for the paths she has traveled, is committed to leaving an impactful legacy regarding the inequities that she has encountered, and looks onward to infinite possibilities for herself and the people she serves.

Denise G. Belle Master of Ceremonies

Page 44: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

42 2014 SOCIETY LEADERSHIP CONFERENCE

SPECIAL

GUESTS

As a child, Chris Nettleton aspired to be a comedian. He also loved participating in sports and, being born and raised in Minneapolis, Minnesota, he especially loved hockey. When he graduated college, both passions coalesced when he began his career in broadcast journalism, spending 15 years working in broadcast news, and more than a decade as a local TV sports anchor. He liked to say he had the best job: He got to watch sports and get paid for it.

His career in TV took him to many towns in many states, landing him in Missoula, Montana in 2004 – one of his most important stops, as it turns out. It was there that he met his wife, Megan, who was attending the University of Montana as a senior. He now had a partner to join him on his travels.

The pair were married in 2007, and later moved to Duluth, Minnesota. On the shores of Lake Superior, Chris continued to live his dream – make people laugh while sharing his love of sports. He may have also mixed in some hockey time, playing goalie for a local pick-up team on weekends.

One day in 2008 while at work, Chris had something strange happen; both of his feet went completely numb. He could still walk, but was tripping constantly, and couldn’t tell where they were in space. This lasted about one month. During this time, he saw multiple doctors who put him through many tests, including electrical muscle stimulation, and tests that involved placing probes directly into his calves.

Finally, he was sent to a neurologist, who performed an MRI, and based on the results, informed him he either had a brain tumor or MS. He and his family went home and had to wait 24 hours for the definitive results. There were many tears and very little sleep. When Chris was finally told he had MS, in a strange twist of fate, he was actually relieved. It was scary, but it wasn’t a death sentence. With this diagnosis, he felt like there was at least hope.

Chris takes his health very seriously, so he immediately went on a therapy. Soon after, his job in TV sports took him and his family to Boise, Idaho. It was here that he decided to go public with his diagnosis. He became his station’s MS ambassador and also became the official emcee for the local National MS Society’s Walk MS event. He now felt a pull to really make a difference, especially in the realm of MS research. His wife, Megan, also began to feel connected to the cause, and began working at the National MS Society. He emceed the local Walk MS, and she ran it – a match made in heaven!

Because MS in an unpredictable disease, Chris recently decided to put away his microphone and go back to school to get his MA and PhD in Journalism and Mass Communications, with hopes of becoming a professor. He is currently attending the University of Minnesota.

He and his wife have an adorable five-year-old named Quinlan, or “Q” as they call him. They truly believe that a cure for MS is within their lifetime, and it is this fact that drives them to play an important role in the MS movement.

Chris Nettleton Master of Ceremonies

Page 45: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

FUELING IMPACT 43

Kate Milliken is the founder of Milligrace Productions and MyCounterpane.com. With more than ten years experience in the field of television, beginning as a correspondent for a college cable network, and continuing into sports for the Outdoor Life Network, Oxygen, and Fox Sports NET. Kate was producer for ABC’s The View and VH-1, and then started her own video production business that focuses on high-end testimonial videos for private clients. After being diagnosed with MS, Kate become involved in the MS movement, hosting programs such as Real Talk. Real Answers, We Keep Moving and ongoing live webcasts broadcast to thousands of people worldwide. She is currently working on mycounterpane.com, a site that offers a way for patients and caregivers dealing with MS to tell their story based on how they feel.

Multi-Platinum country music artist Clay Walker knows about second chances. The Texas native made his mark on the country scene with his debut album in 1993 that included the smash hit “What’s It To You.” Three years later, after a string of number one hits, he was diagnosed with multiple sclerosis. Not letting that set him back, Clay has continued touring and recording steadily since the diagnosis and is well known for his high-energy concerts and performance style. Knowing that others with MS have not been so lucky led him to form the Band Against MS foundation. Since its formation in 2003, Clay has helped Band Against MS raise upwards of $2,000,000 for the cause. Each year he sings the National Anthem for the Texans at Reliant Stadium for their season opener. Clay has had 4 RIAA Platinum albums, 2 Certified Gold albums, and 11 #1 singles to date. His latest single, “She Won’t Be Lonely Long” reached the top 5 and he is currently in the studio working on new music.

Kate Milliken

Ambassadorand ResearchPanel Moderator

Clay Walker Ambassador and Special Guest

Page 46: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

44 2014 SOCIETY LEADERSHIP CONFERENCE

SPECIAL

GUESTS

Zoe Koplowitz Ambassador and Special Guest

In a world that values fast, she is perpetually slow. In a world that demands first, she gives new meaning to the word last. Although Zoe lives with the daily challenges of multiple sclerosis, diabetes and Sjogren’s Syndrome, she has successfully completed a total of twenty seven marathons, always finishing last.

In 2013 her thirty-seven hour, fifteen minute run set a world record for the longest marathon in the history of women’s running.

Zoe has been featured on numerous TV and radio programs including Saturday Night Live, “The Today Show”, the Lifetime Network, CNN, ESPN, and many others. She also holds the distinction of being featured in a Milk Mustache Ad and is chronicled in Wikipedia.

Her volunteer work has been recognized by several organizations including the National MS Society, Chase Manhattan Bank, The Achilles Track Club and the Sara Lee Corp. In addition, L’eggs Pantyhose honored Zoe as a “Woman Who Shapes The World” and donated $50,000 to the National Multiple Sclerosis Society on her behalf.

Zoe’s marathons have become a metaphor for self-acceptance and personal achievement. Her transformational journey of the spirit has captured the imagination of hundreds of thousands of people all over the world, reaching beyond race, class and economics.

In speeches across the country and abroad she shares the true stories and lessons that she has learned in the course of her marathon adventures. Chief among them is the importance of faith, intention and commitment coupled with the dynamic power of humor, friendship and self-acceptance.

Perhaps the greatest lesson of all that Zoe shares applies to both every day life as well as the marathon course.

The race belongs not only tothe swift and strong -but to those who keep on running

Words To Live By ...

Page 47: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

FUELING IMPACT 45

THANK YOU

SPONSORS

PLATINUM SPONSORS

GOLD SPONSOR

SILVER SPONSORS

CHARGING STATION SPONSORS

TECHNOLOGY CAFÉ SPONSOR

CONTRIBUTING SPONSORS

SOCIETY LEADERSHIPCONFERENCE

2014

MAKING ACCESS A REALITY™

Page 48: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Caring deeply,changing lives.

Through cutting-edge science and medicine, Biogen Idec discovers, develops, and delivers impactful therapies for the treatment of relapsing forms of MS.

Visit biogenidec.com or call 1-800-456-2255.

© 2014 Biogen Idec. All rights reserved. 10/14 FCH-1009671

BIME14CDMI1171_L_Caring_Spread_Ad_r4.indd 1 10/10/14 10:29 AM

Caring deeply,changing lives.

Through cutting-edge science and medicine, Biogen Idec discovers, develops, and delivers impactful therapies for the treatment of relapsing forms of MS.

Visit biogenidec.com or call 1-800-456-2255.

© 2014 Biogen Idec. All rights reserved. 10/14 FCH-1009671

BIME14CDMI1171_L_Caring_Spread_Ad_r4.indd 1 10/10/14 10:29 AM

Page 49: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Caring deeply,changing lives.

Through cutting-edge science and medicine, Biogen Idec discovers, develops, and delivers impactful therapies for the treatment of relapsing forms of MS.

Visit biogenidec.com or call 1-800-456-2255.

© 2014 Biogen Idec. All rights reserved. 10/14 FCH-1009671

BIME14CDMI1171_L_Caring_Spread_Ad_r4.indd 1 10/10/14 10:29 AM

Page 50: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

©2013 Genzyme Corporation, a Sanofi company. All rights reserved. MS.US.PO1140.1212 February 2013

1-855-676-6326 www.genzyme.com

We’re steadfast in our commitment to the MS community, with experts dedicated to finding new approaches for confronting this disease.

Genzyme is committed to working harder for our patients—because in the fight against MS, we’re all in this together. And guess what? We’re not backing down.

Multiple sclerosis is not just a disease—it’s a challenge

Genzyme is committed to helping address the needs of people living with MS

beyond their therapy.

We are proud to support the 2014 National Leadership Conference, and look forward

to continuing our work with the National Multiple Sclerosis Society in supporting the

needs of those living with this disease.

Multiple sclerosis is not just a disease—it’s a challenge

Page 51: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media
Page 52: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Novartis Pharmaceuticals Corporation researches, develops, manufactures and markets innovative medicines aimed at improving patients’ lives. We o�er a broad range of medicines for cancer, cardiovascular disease, endocrine disease, in�am-matory disease, infectious disease, neurological disease, organ transplantation, psychiatric disease, respiratory disease and skin conditions. The company’s mission is to improve people’s lives by pioneering novel healthcare solutions.

Novartis proudly

supports the National

Multiple Sclerosis

Society in its efforts

to assist people with

MS and their families.

Novartis is proud to be the

innovative force that’s bringing

new hope and optimism to our

world in so many ways.

www.pharma.us.novartis.com

13997-14 NMSS Two Page Ad-17x11-AD.indd All Pages 10/8/14 9:33 AM

Page 53: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Novartis Pharmaceuticals Corporation researches, develops, manufactures and markets innovative medicines aimed at improving patients’ lives. We o�er a broad range of medicines for cancer, cardiovascular disease, endocrine disease, in�am-matory disease, infectious disease, neurological disease, organ transplantation, psychiatric disease, respiratory disease and skin conditions. The company’s mission is to improve people’s lives by pioneering novel healthcare solutions.

Novartis proudly

supports the National

Multiple Sclerosis

Society in its efforts

to assist people with

MS and their families.

Novartis is proud to be the

innovative force that’s bringing

new hope and optimism to our

world in so many ways.

www.pharma.us.novartis.com

13997-14 NMSS Two Page Ad-17x11-AD.indd All Pages 10/8/14 9:33 AM

Page 54: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

52 2014 SOCIETY LEADERSHIP CONFERENCE

www.acorda.com

Acorda Therapeutics is a proud sponsor of the 2014 National MS Society Leadership Conference. We support the Society in their mission to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

Page 55: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

www.acorda.com

Acorda Therapeutics is a proud sponsor of the 2014 National MS Society Leadership Conference. We support the Society in their mission to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

Page 56: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

We’re Teva Neuroscience.

We’re empowering great minds to discover newer and better ways to fight multiple sclerosis (MS) and Parkinson’s disease...through the quality of our people, the quality of our products and our focus on the patient.

IT TAKES GREAT MINDS TO FIGHT MULTIPLE SCLEROSIS AND PARKINSON’S.

1-800-887-8100

www.sharedsolutions.com

1-800-221-4026

www.tevaneuroscience.com

1-877-429-4532

www.parkinsonshealth.com

Page 57: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

We’re Teva Neuroscience.

We’re empowering great minds to discover newer and better ways to fight multiple sclerosis (MS) and Parkinson’s disease...through the quality of our people, the quality of our products and our focus on the patient.

IT TAKES GREAT MINDS TO FIGHT MULTIPLE SCLEROSIS AND PARKINSON’S.

1-800-887-8100

www.sharedsolutions.com

1-800-221-4026

www.tevaneuroscience.com

1-877-429-4532

www.parkinsonshealth.comWalgreens Specialty Pharmacy locations are ACHC and URAC accredited. ©2014 Walgreen Co. All rights reserved. 14WSP0113 – 1014

Dedication that makes a difference

We are proud to support the National MS Society Leadership Conference and the National MS Society’s tireless efforts

in making a difference in the lives of people living with multiple sclerosis.

URACURAC

NMSS AD_2.indd 1 10/9/14 4:08 PM

Page 58: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Assistance FundMaking Access a Reality™

Page 59: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

MORE THAN 40 YEARS IN

specialty careWhere science is aimed at difficult-to-treat diseases,

like multiple sclerosis and cancer

Page 60: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Dan, patient

To us, scienceis personal.At Genentech, we’re passionate about fi nding solutions for people facing the world’s most diffi cult-to-treat conditions. That’s why we use cutting-edge science to create and deliver innovative medicines around the globe. To us, science is personal.

Find out more at gene.com

90_Dan_4c_nonbleed_7.25x4.75.indd 1 02.10.12 10:44

Mallinckrodt, the “M” brand mark, the Mallinckrodt Pharmaceuticals logo and other brands are trademarks of a Mallinckrodt company. © 2014 Mallinckrodt. PM-03-07-1185-1 10/14 Printed in USA.

Autoimmune and Rare Diseases Business of

Mallinckrodt Pharmaceuticals Proud Supporter ofNational MS Society

2014 Leadership Conference

Page 61: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

There are 7 billion reasons There are 7 billion reasons why we do what we do.why we do what we do.

At Mylan, we are committed to setting new At Mylan, we are committed to setting new standards in health care.standards in health care. Working together Working together around the world to provide around the world to provide 7 billion people 7 billion people access to high quality medicine,access to high quality medicine, we: we:

• • Innovate to satisfy unmet needsInnovate to satisfy unmet needs

• • Make reliability and service excellence Make reliability and service excellence a habita habit

• Do what’s right, not what’s easy• Do what’s right, not what’s easy

• • Impact the future through passionate Impact the future through passionate global leadershipglobal leadership

Mylan.com

Page 62: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

With the support of more than 400

Bike MS teams like you,

PRIMAL HAS DONATED MORE THAN

over the past four years through

the Primal Gives Back program to

help fi ght MS!

Proud to be a national sponsor of

Defy MS by connecting with people around the world striving to live their best lives

ConnectLearn Share

MSconnection.org

Page 63: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media
Page 64: 2014 FuelingImpact ProgramBook V09 - National …...Engaging Volunteers in Community Outreach Fort Worth 2 How to Maximize Event Fundraising and Team Building through Social Media

Recommended