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Spring 2012 MS Connection

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The New Jersey Metro Chapter's free quarterly newsletter, the MS Connection, includes information about current research, coping strategies, symptom management, local educational and fundraising events, and community resources.
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Spring 2012 New Jersey Metro Chapter MOVING TOWARD A WORLD FREE OF MS INSIDE THIS ISSUE: Production of this newsletter is generously supported by: Society Workshops Page 4 The Dirt on Gardening Page 6 Walk MS Page 18 Summer Golf Classic Page 20 Join in the FUNdraising! Fundraising tips on page 17
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Page 1: Spring 2012 MS Connection

Spring 2012 New Jersey Metro Chapter

M O V I N G T O W A R D A W O R L D F R E E O F M S

INSI

DE

THIS

ISSU

E:

Production of this newsletter is generously supported by:

Society WorkshopsPage 4

The Dirt on GardeningPage 6

Walk MSPage 18

Summer Golf ClassicPage 20

Join in the FUNdraising!

Fundraising tips on page 17

Page 2: Spring 2012 MS Connection

LETTER FROM THE CHAIRDear Friends,

As we enter into the Chapter’s second half of our fiscal year and the weather turns conducive

to outside activities, we have a full calendar of events to look forward to! On April 15th, we hold the biggest event of the year in terms of number of participants, Walk MS. At 12 different sites throughout the Garden State, walkers will be blanketing the streets raising both awareness and money

for Multiple Sclerosis. On May 19th and 20th, we hold the first of three MS Bike Tours, the two-day Coast the Coast Ride, which covers roads from Long Branch to Cape May. If a rider participates in the two-day event, they will ride almost 175 miles! Also in May, on Monday the 14th, we are excited about Forks & Corks: A Culinary Experience. This exciting event, with Host Chef Chris Siversen, will include some of New Jersey’s most popular restaurants preparing delicious food alongside unique wine and cocktail pairings. It is held at Maritime Parc in Liberty State Park in Jersey City, overlooking the downtown New York City skyline, which includes the stunning new Freedom Tower. If you would like to learn more about the events, details can be found at the Chapter’s web site, www.nationalMSsociety.org/NJM. We hope to see many of you at one, or all, of these events either as a participant or just cheering on the walkers, cyclists, or eaters!

Mike Gibney Board Chair and Bike MS Cyclist

Publication of the National MS Society New Jersey Metro Chapter

Northern Office: 1 Kalisa Way, Suite 205 Paramus, NJ 07652 201-967-5599

Central Office: 246 Monmouth Road Oakhurst, NJ 07755 732-660-1005

Board Leadership: Staff Leadership:Chair Michael D. Gibney Treasurer Joe WelterSecretary Michael Pawelczak

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The National Multiple Sclerosis Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn’t.

© 2012 National Multiple Sclerosis Society, New Jersey Metro Chapter

Chapter President Jim RobertsExecutive Vice President of Development Karen DrzikVice President of Programs & Services Nancy Chazen Vice President of Development Jennifer HivryVice President of Finance Gwen LeachVice President of Operations Marianne Maddocks

Newsletter Editor: Christine Burri

2 | JOIN THE MOVEMENT: nationalMSsociety.org

Production of this newsletter is generously supported by:

Page 3: Spring 2012 MS Connection

TOLL FREE NUMBER 1 800 344 4867 | 3

MS CENTERS IN NJ The National MS Society, NJ Metro Chapter and the MS Centers in NJ have collaborative relationships that enhance the services that are provided to people and their families who live with a diagnosis of MS. The MS Centers provide clinical care and medical expertise while the Chapter complements that care by offering a variety of educational and support services. The five MS Centers are listed below:

Bergen CountyThe MS Comprehensive Care Center at Holy Name Hospital718 Teaneck Road, Teaneck, NJ201-837-0727Essex CountyMS Comprehensive Care Center atSt. Barnabas Ambulatory Care Center200 South Orange Ave., Livingston, NJ973-322-7484The MS Diagnostic and Treatment Center at UMDNJ90 Bergen St., Suite 8100, Newark, NJ973-972-2550Middlesex CountyRobert Wood Johnson Center for MSClinical Academic Building- 6th Floor125 Paterson St., New Brunswick, NJ 732-235-7733Monmouth CountyThe Linda E. Cardinale MS Center at CentraState HospitalStar and Barry Tobias Ambulatory Campus901 Main St., Freehold, NJ 732-294-2505

WELLNESS PROGRAMSYou can still register for Spring-Summer Classes!

The Chapter continues to offer its unique wellness program throughout the service area. A Chapter booklet is now available describing the classes. Additional community programs are also described in the booklet, including the MS-specific programs at Kessler Rehabilitation in West Orange and the Linda E. Cardinale MS Center (CentraState) in Freehold. You can view the booklet at the Chapter website at www.nationalMSsociety.org/NJM; click on the link to the left for Programs and Services; click on the link to Wellness. You may also call the Chapter at 1-800-344-4867 and ask about Wellness classes. There is something for everyone!

CHAPTER SELF HELP GROUPS OFFER EXCITING PROGRAMSThe Chapter has more than 30 self-help groups in its service area. The groups offer individuals opportunities to meet others who have similar life experiences; to share ideas; to learn from each other; to learn from invited speakers. Everyone is welcome.

To see a monthly calendar of events, view the Chap-ter website at www.nationalMSsociety.org/NJM click on the link for Programs and Services then click on Self-Help groups. You may also call the Chapter at 1-800-344-4867 and ask about self-help groups.

Para obtener información en español sobre la esclerosis múltiple, visite el siguiente sitio web: http://www.nationalmssociety.org/informacion-en-espanol/index.aspx

Page 4: Spring 2012 MS Connection

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NEWLY DIAGNOSED

SOCIETY WORKSHOPS A POINT OF CONNECTIONBY HELEN RUSSON

From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it.

Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of in-person workshops for people who had just been diagnosed with MS.

Each workshop featured a different guest speaker. On the first evening, a neurologist spoke in practical terms about the disease.

Her presentation included a slideshow illustrating how white blood cells inexplicably start attacking the protective coating of the nerves (myelin sheaths). She had actually brought a ruptured electrical cord, exposing the frayed wires underneath. That simple prop was probably the most effective tool of my MS education. It helped me realize that if I’m having a hard time lifting my leg, it’s not because I’m lazy or weak-willed. It’s because of those well-meaning (but very misguided) white blood cells.

Afterward, the neurologist answered our questions about the day-to-day realities of living with MS. She also talked about some ongoing clinical trial studies and invited us to learn more about them. (I ended up participating in several such studies, all of which were very rewarding.)

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.

JOIN THE MOVEMENT®

Nadja (middle), diagnosed in 2008

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TOLL FREE NUMBER 1 800 344 4867 | 5

Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We

were introduced to experts in

medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?)

Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet!

New frontiers

Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society—and to each other.

“Almost every home now has access to the Internet and that seems to be a primary source for information, especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and creative ways to reach people.”

Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors.

Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us or 1-800-344-4867 to be connected to an MS Navigator®.

MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact.

Helen Russon is a volunteer at the Oregon chapter.

An in-person workshop at the Central North Carolina Chapter

Page 6: Spring 2012 MS Connection

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LIVING WITH MS

Staci, diagnosed in 1985

THE DIRT ON ADAPTIVE GARDENING

Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.”

Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out.

A garden open to all

Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she says. Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top where people can sit and work on the bed.” It also features an A-frame trellis called a “cattle panel” that vines, squash and cucumbers grow on. “Someone in a wheelchair can roll under it and reach right up and pick fruits and vegetables,” says Leonard, who was diagnosed with MS in 1997.

Leonard’s been gardening for seven or eight years, starting with flowers in pots, then moving on to tomatoes. She and her husband “picked beets and mustard greens in January, and we had fresh tomatoes for Christmas dinner,” she says. “It sure is nice to be able to step outside and get good fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.”

Get prepared

Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late

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TOLL FREE NUMBER 1 800 344 4867 | 7

You can learn more about gardening from your county’s Cooperative Extension Office; they are found in all 21 New Jersey counties and are the result of a partnership between Rutgers Cooperative Extension, County Boards of Chosen Freeholders, and the U.S. Department of Agriculture. These offices in NJ are your first stop for all kinds of information and assistance regarding 4-H, agriculture, family and community health sciences, marine science, and natural resources and the environment. Please visit or contact your county office with any questions you may have; learn more at this website: http://njaes.rutgers.edu/county/

in the day. Set up a shady rest area with a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 1-800-344-4867 for information about cooling resources or visit www.msassociation.org/programs/cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www.abledata.com and search for “garden tools” to get an idea of what’s available. Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits—literally—of your labors!

LOOKING TO GET INVOLVED?Become a volunteer for the New Jersey Metro Chapter. Volunteer opportunities include:

Event Volunteers: Assist in all aspects of our Walk MS, Bike MS, and MuckRuckus MS events. This may include check-in, rest stop, finish line, lunch, route marking and sign removal. You could also volunteer services which include the following: face painters, DJs, clowns, caricaturists, comedians, photographers, massage therapists, etc.

Office Volunteers: We are in need of volunteers to assist with various tasks including administrative work and mass mailings in our Paramus and Oakhurst offices.

Health Fair Committee: Becoming a part of the Health Fair Committee is a wonderful opportunity to educate the public about MS and to spread the word about all that the Chapter has to offer.

Interns: The Paramus and Oakhurst offices are continuously seeking Interns to assist with events, as well as our programs and services for our friends living with MS and their families. Positions are available for the all semesters.

For more information, please contact Lauren Pisaniello, Volunteer Manager, at 732-660-1005, x44323 or [email protected]

Page 8: Spring 2012 MS Connection

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NEWS

ONLINE PEER SUPPORTDo you currently volunteer with us in a peer support program, or would you like to learn how to do so? Are you interested in participating in a new nationwide peer support program? If yes, read on …

The Society’s Online Peer Connections program is currently seeking people with MS or family members of people with MS who are interested in becoming peer support volunteers. As a volunteer, your profile would be included in an online database, searchable by demographics such as age or mobility status. Once a person with MS selects you as their peer support person, you would then arrange to speak one-on-one either via email or telephone on an agreed-upon topic. All conversations are confidential.

The program begins this March. Visit www.nationalMSsociety.org/onlinepeerconnections, or contact Monica Aden, Online Peer Connections program coordinator, at 1-303-698-6100, x15169, [email protected] to learn more.

BLOG OPENS DOORS FOR MS COMMUNITY

Fatigue, isolation, doctor’s visits—and yes, sex with MS—are just a few of the topics covered in the Society’s new blog at blog.nationalMSsociety.org.

Not much is off-limits to Society bloggers and commenters. Instead, people with MS and MS specialists dig into very personal issues—and universal ones. “In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and—quite frankly— by many of us living with MS) to discussion,” wrote blogger Trevis Gleason on January 4. “To that end, I’d like to take this opportunity to ask you—the

readers of The Unspeakable Bits —what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?”

Join in the conversation at blog.nationalMSsociety.org.

GRANT FUNDING SOUGHT: Do you know of a private corporation or foundation that donates to organizations like the National MS Society? If so, please contact Linda Rossi at 732-660-1005, x44315 or [email protected].

Café con Leche

Invitamos a las personas hispanas/latinas con esclerosis múltiple a participar una vez al mes en un grupo telefónico gratis totalmente en español. Para más información o para inscribirse llame al 1-800-344-4867, opción 3. (Hispanic /Latino people with MS can participate by phone in a free monthly Spanish-language support group. For more information, call 1-800-344-4867 and press 3.)

Society blogger Nicole Lemelle

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TOLL FREE NUMBER 1 800 344 4867 | 9

KEEPING UP WITH HEALTH REFORMBY KIMBERLY CALDER

With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area.

The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor.

The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and information-sharing between policymakers, activists and others working on health reform implementation.

The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation

Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more.

To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www.MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ACAFAQ, as more is understood about how the law could impact people with MS.

Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy.

MS ACTIVISTS HELP ADD MS TO COMPASSIONATE ALLOWANCES LIST

Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly.

ADVOCACY

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RESEARCH

SURVEY SAYS WALKING ISSUES IMPORTANT TO ADDRESS

Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.

Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.

While 65% of those surveyed reported walking difficulties or trouble with balance, 40% “rarely or never” discussed the issues with their doctor.

“Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, PhD, vice president for Health Care Delivery and Policy Research at the Society.

RESULTS IN FOR POTENTIAL MS THERAPIES• In a two-year Phase III trial, the oral MS therapy

BG-12 significantly reduced—by up to 51%—the average number of annual MS relapses. More than 1,400 people with relapsing-remitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS.

• The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CARE-MS II, involved 840 people with relapsing-remitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.

• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of participants in each group who experienced events defined as treatment failure. Teriflunomide is thought to prevent damage to the nervous system by immune cells. A previous phase III trial was more successful and three others are ongoing. The FDA is reviewing an application for marketing approval of teriflunomide.

To stay current on MS therapies in the pipeline for FDA approval, sign up for MS eNEWS at www.nationalMSsociety.org/signup.

Susan Cohn-Child, diagnosed in 1995, walks with son Zach

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NEWS

WELLNESS AT KESSLER Kessler Institute for Rehabilitation’s MS Wellness Program in West Orange is now entering its 5th year! The MS Wellness Program is a 10 week pro-gram that encompasses the Living with MS Support Group Series and Wellness Seminars. Recent data from the program shows that participants have

reported a decrease in depressive and anxiety symptoms and overall improved well being.

The program focuses on creating a greater awareness and understanding of the many changes that individuals with MS might experience and empowering persons to effectively increase quality of living through education, support and experiential activities. If you are interested in participating in this program, please contact the Neuropsychology Department at Kessler Institute for Rehabilitation at 973-324-3624.

NEW JERSEY’S LARGEST HEALTH SYSTEM ADOPTS NEW NAME Saint Barnabas Health Care System is Now “Barnabas Health”

Saint Barnabas Health Care System, New Jersey’s largest health care provider, announces it has changed its name to “Barnabas Health.” On June 20, 2011, the Saint Barnabas Health Care Board of Trustees unanimously voted to change the organization’s name. The MS Center on that campus is now referred to as MS Comprehensive Care Center at the Barnabas Health Ambulatory Care Center.

MS WELLNESS AT CENTRASTATE The MS Wellness Program at the Linda E. Cardinale MS Center at CentraState Medical Center is designed to optimize the quality of life for those living with the challenges of MS. The next series of classes begins May 17. There are also a variety of ‘graduate’ classes (for anyone that has completed the 12 week wellness class): • Stretching and Balance Class – Wednesdays from 12:30 - 1:30pm

• Tai-Chi - Thursdays from 1 pm- 2pm

• Stretching and Balance Class (advanced) 2 pm - 3pm

• Aquatic classes begin on March 6th. The class will run for six consecutive Tuesdays. Registration is required. The fee for the six classes is $20.00

• Adult Scuba classes will soon be announced. To learn more about these programs and future classes, contact Ruth Memoli CSW, MS Wellness Coordinator at 732 637-6334 or [email protected].

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NEWS

NEW JERSEY GOVERNOR SIGNS MS TASK FORCE BILL

A bill sponsored by Senator Fred Madden (D-Washington Township) that would

establish the New Jersey Multiple Sclerosis Task Force within the Department of Health and Senior Services (DHSS) was signed into law in January 2012.

This legislation will establish a 14-member committee, made up health officials, representatives of the Society, and people living with MS, to develop strategies and provide recommendations that will improve the lives of people living with MS in New Jersey. This is a great victory for the New Jersey Metro and the Greater Delaware Valley chapters of the National Multiple Sclerosis Society. These chapters have worked diligently with MS activists to push forward this legislation to address the unmet needs of people with MS in New Jersey. Go to http://www.politickernj.com/53674/madden-bill-creating-nj-multiple-sclerosis-task-force-signed-law to read the full story.

JOB READINESS TRAINING PROGRAM

The Chapter will host a job readiness program for clients who are looking for employment

and who qualify under the grant.

The program will consist of 9 sessions during the months of April and May and will include workshops on: Interest Testing, Development of Transferable Skills, Knowing Your Rights, Developing a Job Search Plan, Resume Clinics, Interview Clinics, and a Mock Interview Day. Workshops will be led by professionals in the world of employment.

The sessions will all be held at CentraState Medical Center, Star & Barry Tobias Ambulatory Care Center Conference Center. Thanks to the Peter Jay Sharp Foundation for awarding the Chapter the funds to be able to offer this most comprehensive look at the employment scene. For more information, contact Pat Evertz, Director of Services, at 201-967-5599, x43205 or [email protected].

DOES YOUR BANK DONATE TO CHARITY?

Some banks have an affinity program where you can link your checking/savings account to

a charity. For example, TD Bank provides an an-nual contribution based on the average balance in all members’ accounts. Checking, Savings, Money Market, CD and IRA accounts are all included in the program. You can learn more about the TD Bank program from their website: http://www.tdbank.com/affinity/. Speak with a representative from your bank to learn how they may contribute to the NJ Metro Chapter!

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PROGRAMS

TWO RESIDENTIAL COMMUNITIES TAKE ADVANTAGE OF CURRENT TECHNOLOGY!

What is the shared experience of the residents of Kershaw Commons in

Freehold, NJ and Kingsley Commons in Minneapolis, Minnesota? These two residential communities for people with disabilities that require MS related services held their first-ever Skype session in January! Skype, for the uninitiated, is an exciting multi-media technology which essentially combines a phone call and live video, allowing participants to see and hear their interactions, not just conversations. Kershaw Commons resident, Barbara O’Reilly, shares this account of the exciting experience that is leading to many new relationships: On the NJ side, the session was coordinated by Chapter staff and Dennis Huntley, a volunteer and Information Technology (IT) expert. In Minnesota, the call was coordinated by the local Chapter staff in collaboration with the President of the Kingsley Commons Resident Association, David Chaikin. Participants in the Skype session included residents from both residential developments. The developer of Kershaw Commons, Ken Regan joined the call. Ken visited Kingsley before building Kershaw; he said he viewed Kingsley as a prototype for Kershaw. He learned what the Kingsley residents wanted in an accessible

building, among other things, they unanimously said automatic doors. The Kershaw Commons residents thanked the Kingsley folk for that wonderful suggestion! “We’re very grateful they made that recommendation,” said Scott Schroeder of Kershaw. “When I first moved in, I thought that was the best part.”

The participants of the call noted some differences and similarities in their buildings. They appreciated the Skype call that gave them this wonderful opportunity to share ideas, struggles and successes. Some of the call participants commented; “It was very interesting,” said Lynn

Ackerman of Kershaw. “I liked hearing about their building and how the residents really enjoy living there.” Mr. Chaikin, who said their residents also enjoyed the Skype interaction, proposed the two communities do more “Skype –ing” on an occasional basis, maybe every quarter. Everyone in both states agreed and looks forward to continued communication.

Barbara O’Reilly is a writer who lives at Kershaw Commons, Freehold, NJ. Her first book, Grace Under Pressure, about women and the church, will be out shortly.

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PROGRAMS

SWIM IN – REGISTRATION TAKING PLACE NOW!

Water activity is beneficial for people who have MS. Since 1976 Swim-In has

provided a free, once-a-week recreational swimming program where people with MS have an opportunity for therapeutic exercise. The emotional and psychological benefits of Swim-In are equally valuable. This program is supervised by licensed physical therapists, who, as well as all of the other members of the group, are volunteers. Volunteers help the swimmers dress and undress; they push the wheel-chairs and are “buddies” in the pool. The program takes place at the Jewish Community Center on the Palisades in Tenafly.

This community-based project is co-sponsored and funded by the National Multiple Sclerosis Society, NJ Metro Chapter in collaboration with the Bergen County Section of National Council of Jewish Women.

To learn more about becoming a swimmer or a volunteer, please contact Lisa Gordon at the Chapter at 201-967-5599, x43218 or [email protected]. You can also read more about Swim-In from this link on the Chapter website: http://www.nationalmssociety.org/chapters/njm/programs--services/wellness/swim-in/index.aspx.

FUN DAYS AT MONMOUTH PARK RACETRACK!June 2 and 3 Fun Days is one of the Chapter’s most popular programs – music, prizes, face painting, pony rides, and lots and lots of fun! People come back year after year looking to meet up with old friends and to make new friends. Save the date!

When: Saturday, June 2 and Sunday, June 3 11:30 am-3:30 pmWhere: Monmouth Park Racetrack, Oceanport, NJ Registration is required and is first come first served. Watch your mail for the brochure. For more information or questions, please contact Allison Cerco at the Chapter at 1-800-344-4867 or [email protected].

MS YOUTH MOVEMENT

Members consist of teens who have MS or who are affected by MS through means of

a family member or friend. Other youth looking to make a difference in their community are also welcome. This is an opportunity to connect with other youth in the movement to create a world free of MS. Become a member!

Find us on Facebook and follow us onTwitter @MSYouthMovement or email usat [email protected]

Check out our blog:msyouthmovement.blogspot.com

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RESEARCH

KIDS CAMP WEEKEND!

Parents get ready, children get ready! It’s that time of year again! Our 17th Annual Kids Camp

Weekend will be held July 27 – July 29, 2012 at Refreshing Mountain Camp in Stevens, PA. Kids Camp is specifically designed for children who have a parent living with MS. The National MS Society is pleased to extend an invitation to children between the ages of 7-15 who may be interested in attending. It’s a wonderful opportunity for children to make new friends from other chapters. The cost is $25 per child for the weekend. This fun-filled weekend will include swimming, zip lines, nature activities, sports and much more! So don’t be shy, come and join us…you don’t want to miss it!!! If you have any questions about this weekend or how to receive an application, please call Lauren Pisaniello at the Chapter Office at 732-660-1005, x44323 or [email protected]. Completed applications are due back by June 18, 2012.

SAVE THE DATE!FORKS & CORKS: A CULINARY EXPERIENCE Monday, May 14, 2012 - Maritime Parc84 Audrey Zapp Drive, Liberty State Park, Jersey City, NJ 07305This exciting new culinary event with Host Chef Chris Siversen, will include some of New Jersey’s most popular restaurants preparing delicious bites alongside unique wine and cocktail pairings. Please visit the Chapter website for more information www.nationalMSsociety.org/NJM or contact Christine Burri, Logistics Manager, at 201-967-5599, x43212 or [email protected].

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FUNDRAISING

A designer in East Rutherford hosts a Fashion Show on behalf of the National MS Society.

A dance instructor in Dover sponsors an annual Dance-A-Thon to raise awareness and stay in shape. A restaurant owner living with MS in Belmar hosts a Dine-In night to raise money for a cause that hits close to home. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strong-man competition.

Diverse as they are, these events are all Do-It- Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk MS participants,” according to Rachael Nuwash, DIY project manager for the Society.

These resources include a toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable,

finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more. The toolkit also includes flyers, badges and email signature images to download. These tools allow organizers to easily and quickly reach out to friends, family members and co-workers.

“The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.”

“This is a great tool for anyone who doesn’t participate in our core Walk MS, Bike MS, and MuckRuckus MS Events” says Lisa DiBenedetto, Manager of Teams and DIY Liaison at the New Jersey Metro Chapter. “If you have a great passion in your life and an even greater passion to do more for the cause, this tool is the perfect option for you.” For more information about Do-It-Yourself Fundraising, visit the online tool at www.doityourselfms.org

DO-IT-YOURSELF FUNDRAISING GETS BOOST

Teaneck Fairleigh Dickenson University Walk-A-Thon

Strong Man Competition

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Let the Teams Department help you put the FUN in your FUNdraising!

Here are some ideas on how to make some additional money for your team:

• Contact a restaurant in your area (TGIFridays, Applebees, Cheeseburger In Paradise, Atlanta Bread Company, to name a few) and see if you could host a “Dine-In” where a percentage of each check gets donated to your team.

• Go to your favorite local establishment and ask if they would sell Walk MS and Bike MS pin-ups. The money raised from the sales will go to your teams total. Pin-ups are available at your local chapter office.

• Ask your employer about hosting a “Dress Down Day.” Interested employees can pledge $10 or $20 for the privilege of dressing down. Dress down can include jeans day, orange day, etc.

PUT THE FUN IN YOUR FUNDRAISING!

Where does the income go?

Services & Programs – 44%

Fundraising – 15%

Research – 14%

National Programs – 11%

BenefittoDonor–11%

Administration– 5%

KISS MS GOODBYE!

T he New Jersey Metro Chapter is selling an exclu-sive lipstick and lip gloss in beautiful tones of the

energizing signature shade of MS ORANGE in an effort to raise funds for programs and services that address the challenges of all those affected by MS. LipToxyl® Rouge Lipstick in Coral Charm merges plumping, advanced age-defying and moisturizing

benefits with rich, lush color in a single sweep application. This breakthrough lipstick is fortified with our exclusive Collagen Tripeptide Complex, an anti-aging powerhouse that stimulates collagen production

to help reduce visible signs of aging. It instantly re-hydrates lips for a plumper, smoother, fuller appearance.

Liquid Luster Lip Gloss in Tempest is an intense shine lip lacquer that plumps up the volume to create sensuous and seriously sexy lips. It instantly refines and reshapes the contour of your lips.

You can help our cause and make the world free of MS by purchasing either or both of the following:

LipToxyl Rouge Lipstick in Coral Charm for $21 orLiquid Luster Lip Gloss in Tempest for $20 (S&H cost is $2 each) For each lipstick or lip gloss sold, 75% of the proceeds will go to the New Jersey Metro Chapter. To make a purchase you can contact Linda A. Rossi, by phone at 732-660-1005, x44315 or by email at [email protected]

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WALKMS

Save the date! The New Jersey Metro Chapter will be hosting its 24th annual Walk MS on Sun-day, April 15th and we invite you, your family, friends, neighbors and co-workers to join the movement. You can choose to walk in one of 12 unique and very special locations in Northern or Central New Jersey. Sites include a lovely and tranquil park setting, an outstanding view of the New York skyline, or an ocean view along the boardwalk on the Jersey Shore. Each distinctive walk site has something for everyone, including rest stops that are fully-stocked with water and snacks and lunch at the end!

Throughout the country, over 600 walks will be taking place in 2012. The New Jersey Metro Chapter walk locations are as follows:

North Jersey

• BergenCounty- The New Overpeck County Park • Cranford- Nomahegan Park

• JerseyCity- Liberty State Park

• Roseland- Mack Cali

• Roxbury- Horseshoe Lake Park

24TH ANNUAL WALK MSWALK TOWARDS A WORLD FREE OF MS!SUNDAY, APRIL 15TH

Cano Family & Friends Team

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For more information or questions on these walk locations, or for sponsorship opportunities, contact Jennifer Hivry, Vice President of Development, at [email protected]. For information on forming a team or if you are currently a team captain, contact: Alexis Stone, Director of Teams and Corporate Development at [email protected] or Lisa DiBenedetto, Manager of Teams, at [email protected]. Or call our Paramus Office at 201-967-5599.

Central Jersey

• Belmar/Spring Lake - Bar Anticipation

• Flemington - Liberty Village Premium Outlets

• Freehold - CentraState Medical Center/Health & Fitness Center

• Hamilton- Steinert High School

•NorthBrunswick- Parsons School at Babbage Park

• SandyHook- Gateway National Park-Area E

• SeasideHeights/SeasidePark-Tri Boro First Aid Squad

For more information or questions about these lo-cations, or for sponsorship opportunities, contact Patricia Tupycia, Director, Walk MS & Corporate Relations at [email protected]. For infor-mation on forming a team or if you are currently a team captain, contact: Alexis Stone, Director of Teams and Corporate Development at [email protected] or Allison Story, Coordinator of Teams, at [email protected]. Or call our Oakhurst Office at 732-660-1005.

Walk routes range from 4 miles to 6 miles, depending on the walk site that you choose and all include at least one rest stop with water, a snack and restroom facilities. You do not have

to walk the entire route; you can walk whatever length you wish. Each individual walker who raises $125 or more will receive an event t-shirt the day of the walk. Raise $250 or more and you will be eligible for some wonderful prizes.

To learn more and to register yourself or your team, visit walknjm.nationalMSsociety.org. Once registered, you will have access to an on-line personal fundraising page where friends and family can visit and donate. You will also find information about forming a team, fundraising tips and ideas, directions to each walk location, a listing of the prize incentives, as well as forms you can download. And, be sure to visit our Facebook page and become a fan!

Jointhemovement! Get involved in a Walk MS event near you and help us to achieve our vision of creating a world free of MS! Register today!

Kelly Takasch, the Most Inspirational Walker in North Brunswick

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PROGRAMSEVENTS

Gather your friends, family and business col-leagues for an exciting day of golf at one of the top private country clubs in New Jersey!

The New Jersey Metro Chapter will be hosting the MS Summer Golf Classic on June 25, 2012 at the Plainfield Country Club in Edison, NJ. Home to The Barclays 2011—Plainfield remains consistently top-ranked nationally in the U.S. by Golf Digest and Golfweek magazines. Challenging the game’s best players, the exquisite course was brought to life by famed architect Donald Ross and is widely regarded as one of his masterpieces. For nearly 100 years, Club members and guests have been enjoying this exclusive golf course and we invite you to share in that heritage and unique experience.

Join with corporate teams from around the state for a first-class day of golf, high-level networking, food, cocktails, raffles and more. Availability is limited. To ensure your participation today, please visit our Chapter website for registration at www.nationalMSsociety.org/njm.

All proceeds will benefit the New Jersey Metro Chapter helping drive critical research, programs and services moving us closer to a world free of MS. For more information, please contact Karen Drzik, Executive Vice President of Development, at 201-967-5599, x44316 or [email protected].

MS SUMMER GOLF CLASSIC MONDAY,JUNE25TH

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The National MS Society - New Jersey Metro ChapterThanks New Jersey’s Business Leaders

For attending the

2012 Address to theBusiness Community

Sponsored By:

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WALK MSApril 15, 2012walknjm.nationalMSsociety.org

SPRING GOLFMay 7, 2012www.nationalMSsociety.org/NJM

FORKS & CORKS: A CULINARY EXPERIENCEMay 14, 2012www.nationalMSsociety.org/NJM

COAST THE COASTMay 19 & 20, 2012bikenjm.nationalMSsociety.org

SUMMER GOLFJune 25, 2012www.nationalMSsociety.org/NJM

CHALLENGE WALKSeptember 7-9, 2012www.nationalMSsociety.org/NJM

HOPS TO HOPSSeptember 16, 2012bikenjm.nationalMSsociety.org

WOMEN ON THE MOVE LUNCHEON - CENTRAL NJ September 20, 2012www.nationalMSsociety.org/NJM

GREAT NEW JERSEY COUNTRY BIKE RIDE(25th Anniversary Ride)September 22 & 23, 2012bikenjm.nationalMSsociety.org

WOMEN ON THE MOVE LUNCHEON - NORTHERN NJ November 9, 2012www.nationalMSsociety.org/NJM

2012

CA

LEN

DA

R O

F EV

ENTS

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TOLL FREE NUMBER 1 800 344 4867 | 23

In Honor and Loving MemoryIn Remembrance

Ida BarberaSusan Corsie Bauer

Robert Baugh Carol Becker

Emory BermanStewart BuddCharles BurkeAnn CarrieroChris Cerruto

Paul D. DellaportasTheodore “Ted” Dembowski

Marie Fox DunnClara Figura

Santa FioravantiHerbert Freedman

Angela GaetanoStephen Gilbarg

Ruth GordonMarcella “Marcy” Gray

If you have lost a loved one and would like their memory honored, please contact

Marianne at [email protected] or call 732-660-1005 ext. 44313

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than

ten thousand tongues. They are messengers of overwhelming grief... and unspeakable love.”

- Washington Irving

Joseph B. Grosch, Sr.Catharine Rigby Helck

Marilyn Ann HenryArnold “Arnie” Hivry

Calvin JacobsonJosephine Johnson

Elizabeth R. JohnsonElaine KaplanLynne Kohler

David Scott LugoLillian P. Manischewitz

Mary McGovernHelen Nazzaretta

Giesla NowakJane Phillips

Kevin M. RussellLillian SegalVinnie Sisto

Andrea Taddeo

Marine Cpl. Kevin James Reinhard Army Spc. Ronald H Wildrick, Jr.

Army Sgt. John LyonsArmy National Guard Staff Sgt. Jorge M. Oliveria

Page 24: Spring 2012 MS Connection

FREE MATTERFOR THE

BLINDOR

HANDICAPPED

New Jersey Metro Chapter 246 Monmouth RoadOakhurst, New Jersey 07755

TakeasurveyabouttheMSConnection,andletusknowwhatyouthinkaboutthepublication.Weneedyourinputtohelpshapethenewsletterforfutureissues!Youcantakethesurveyonlineat

http://www.surveymonkey.com/s/R5MZCKZ.Thankyouinadvanceforyourhelp!

National Multiple Sclerosis Society, New Jersey Metro Chapter We mobilize people and resources to drive research for a cure and to address the

challenges of everyone affected by MS.

Clip this convenient form and mail it with your check today! WE NEED YOUR HELP!

Please Check: o Person with MS o Relative o Other

Name _________________________________________________________________

Address ________________________________________________________________

City ____________________________________ State _________ Zip _____________

One Year MembershipNew Jersey Metro Chapter246 Monmouth Road Oakhurst, NJ 07755

o $1,000 (and over) BENEFACTORo $500 SUBSCRIBINGo $100 PATRONo COMPLIMENTARY (Person with MS unable to pay.)o $25 SUSTAININGo $20 GENERALo OTHER


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