SUMMER 2014 NATIONAL MS SOCIETY.ORG/FLN MS CONNECTION NEWSLETTER continued, page 05... e North Florida Chapter of the National MS Society has announced this year’s recipients of its annual Scholarship Program: Khalilyl Bogarty, Cameo Isleborn and Tiffany Kemple. e program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has not yet been to a post-secondary school. In addition to the emotional toll, MS can have a substantial financial impact on a family. e direct and indirect costs of MS, including lost wages — even for those with health insurance — are estimated at more than $70,000 annually per household. is makes funding a college education that much harder. Khalilyl Bogarty was diagnosed with MS when he was just 16 years old. “I never could have imagined myself with a disability, especially not MS,” Khalilyl recalls. “I thought I was too young for such a sickness. MS affects my balance and ability to recall information when necessary.” But MS hasn’t stopped him from being an outstanding teenager. A cross country and wrestling letterman and an Eagle Scout, Khalilyl attends Terry Parker High School and hopes to attend the University of South Florida to become a civil engineer. “is scholarship is a wonderful way to help individuals and their families further their education and improve their lives,” Khalilyl says. “Many people may not have the opportunity to attend school without support from donors.” CONNECT WITH US ONLINE: National MS Society North Florida Chapter nationalMSsociety.org/FLN Like us: facebook.com/ MSNorthFlorida Follow us: twitter.com/ msnorthflorida Watch us: youtube.com/ msnorthflorida KHALILYL BOGARTY NORTH FLORIDA CHAPTER ANNOUNCES 2014 SCHOLARSHIP RECIPIENTS
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SUMMER 2014NATIONALMSSOCIETY.ORG/FLN
MS CONNECTION NEWSLETTER
continued, page 05...
The North Florida Chapter of the National MS Society has announced this year’s recipients of its annual Scholarship Program: Khalilyl Bogarty, Cameo Isleborn and Tiffany Kemple.
The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has not yet been to a post-secondary school.
In addition to the emotional toll, MS can have a substantial financial impact on a family. The direct and indirect costs of MS, including lost wages — even for those with health insurance — are estimated at more than $70,000 annually per household. This makes funding a college education that much harder.
Khalilyl Bogarty was diagnosed with MS when he was just 16 years old. “I never could have imagined myself with a disability, especially
not MS,” Khalilyl recalls. “I thought I was too young for such a sickness. MS affects my balance and ability to recall information when necessary.” But MS hasn’t stopped him from being an outstanding teenager. A cross country and wrestling letterman
and an Eagle Scout, Khalilyl attends Terry Parker High School and hopes to attend the University of South Florida to become a civil engineer. “This scholarship is a wonderful way to help individuals and their families further their education and improve their lives,” Khalilyl says. “Many people may not have the opportunity to attend school without support from donors.”
CONNECT WITH US ONLINE:
National MS Society North Florida Chapter
nationalMSsociety.org/FLN
Like us:facebook.com/MSNorthFlorida
Follow us:twitter.com/msnorthflorida
Watch us:youtube.com/msnorthflorida
KHALILYL BOGARTY
NORTH FLORIDA CHAPTER ANNOUNCES 2014 SCHOLARSHIP RECIPIENTS
2 MS CONNECTION: SUMMER 2014 3NATIONALMSSOCIETY.ORG/FLN | 1-800-344-4867
LETTER FROM THE PRESIDENT
Friends,
Just after the first of the year, I bought a bike. It’s bright red and I made sure to purchase coordinating accessories. The first day I took it out I made the rookie mistake of forgetting to clip out of my pedals when I made it back to my car. Luckily, I fell to the left on the grass, instead of to the right on the gravel! After 14 years of working for the Society and Bike MS, I figured it was time to see what all of the excitement was about! I finally registered for my first Bike MS. At the end of this summer my husband, Chris, and I will ride with board member Bruce Reid in the Bike MS: “Rock N’ Hot” ride from Little Rock to Hot Springs, Arkansas.
On September 20th and 21st, more than 2,000 people will get in the saddle to create a world free of MS at Bike MS: PGA TOUR “Cycle to the Shore”. Bike MS truly is a ride for cyclists of all abilities. Whether you are in for the century (105 mile) option, or the one-way, one-day 37 mile option, Bike MS is guaranteed to be a weekend that you and your team won’t soon forget!
Want a taste of Bike MS? Please join us at our Bike MS Kick Off Ride, starting from the TPC Clubhouse on Saturday June 21st. This fully supported ride has several mileage options, fully stocked rest stops, and lots of new friends.
If you have a bike, you’re well on your way to riding Bike MS. If you don’t have a bike, let us connect you with one of our wonderful sponsoring bike shops and they will get you all geared up to ride. Not a cyclist? There are plenty of volunteer opportunities for people of all ages and abilities. For more information on Bike MS please call our office or visit www.bikeMS.org for all of the details.
See you on the road! Corrina Steiger Madrid
The National MS Society is proud to be a source of
information about MS. The content is based on
professional advice, review of independent research,
published experience and expert opinion. The National
MS Society makes no warranties regarding the
information provided and the information is provided
for your educational purposes only. Any provided medical information is of a general nature and should not be
substituted for the individual therapeutic recommendation
or prescription by a medical person. For specific
information and advice relating to your personal
medical condition, always consult your personal
physician.
Early and ongoing treatment with an FDA-approved
therapy can make a difference for people with multiple
sclerosis. Learn about your options by talking to your
healthcare professional and contacting the National MS
Society at nationalMSsociety.org or 800-344-4867.
MS ACTIVISTS HEAT UP CAPITOL HILL IN TALLAHASSEE AND WASHINGTON
Each of us has a story that can help increase awareness about MS, educate public officials, and drive change. Become an MS activist to support important policy issues impacting people living with MS. It can be as simple as sharing your story or thanking your public official via social media for supporting a bill. This spring, activists took their stories to Washington, D.C. and Tallahassee, FL.
More than 300 activists from across the nation attended the annual Public Policy Conference in Washington, D.C. in March. Advocates in orange
visited their legislators to express the need for adequate funding for the NIH and FDA, ensuring access to quality complex rehab technologies, and to join the MS Caucus. Among the delegates from North Florida were Joya Frazier and Robinee Phillips from Tallahassee, and Donald Horner III from Jacksonville. Robinee is a 7th grader whose mom, Joya, has lived with MS her whole life. Donald is a member of the North Florida Chapter board of trustees who also lives with MS.
Closer to home, Florida activists visited our own Capitol Hill in Tallahassee for Tally Watch. Thanks to our delegates’ hard work, the state made great headway in expanding telemedicine. The delegates will continue to work to expand Medicaid in Florida in future sessions. Florida Governor Rick Scott issued a proclamation naming March 2014 MS Awareness Month in Florida. This was a great opportunity to spread the word about MS and its impact on families.
For more information on how you can become an MS Activist and have your voice heard, visit our website or call our staff today. n
CHRIS, BRUCE AND CORRINA TRAIN FOR BIKE MS ALONG
A1A NEAR ST. AUGUSTINE.
JOYA FRAZIER AND ROBINEE PHILLIPS, A MOTHER-DAUGHTER MS ACTVIST TEAM FROM TALLAHASSEE, ATTENDED THE PUBLIC POLICY CONFERENCE IN WASHINGTON DC IN MARCH
ADVOCATES MET WITH ELECTED OFFICIALS DURING TALLY WATCH IN APRIL. PICTURED FROM LEFT: CHERYL RUSSELL, MEISHA DUBOIS, REPRESENTATIVE MIA JONES, AND CORRINA STEIGER MADRID.
4 MS CONNECTION: SUMMER 2014 5NATIONALMSSOCIETY.ORG/FLN | 1-800-344-4867
BIKE MS: PGA TOUR CYCLE TO THE SHORE KICK OFF RIDE
June 21st is the first day of summer, as well as the day for the 2014 Kick-off Ride! The ride will begin at 7:30 a.m. at TPC Sawgrass with a 40, 20 and 10 mile ‘Rookie Ride’ option. The new Rookie Ride option is a 10 mile no-drop ride GREAT for new riders to learn about cycling and the rules of the road. Cost for the ride is $5.
This event is great for cyclists, spectators, and volunteers. Without the support of volunteers and spectators, this ride would not be successful. Volunteers are a crucial part of the National MS Society’s Mission. Each year, a countless number of volunteers and event participants help fuel our many successes as we work together to create a world free of MS. At the 2014 Kick-off Ride, there are many different ways to show your support including registration, food preparation and cheering on the cyclists, just to name a few.
If you are interested in volunteering at the 2014 Kick off Ride, please contact the National MS Society at 904-332-6810 or at [email protected]. This event utilizes volunteers of all ages
and from every demographic. We are looking for enthusiastic volunteers who may be interested in cycling or getting involved for a good cause. n
PICTURED: VOLUNTEERS FROM THE 2013 BIKE MS: PGA TOUR CYCLE TO THE SHORE.
Cameo Isleborn and Tiffany Kemple both attend Mandarin High, and their mothers live with MS. “My mom has MS,” Cameo says. “It is a devastating disease that has made me different from my friends, but has also made me a stronger person.” Cameo stays busy by keeping up her GPA, volunteering, and working part time. She plans to enter the University of Florida’s pre-med program in the fall.
“Because my mom has a disability, I am aware of the
challenges other people with disabilities face daily,” Tiffany says. Through the National MS Society North Florida Chapter, Tiffany attended MS Kids Camp, a weekend retreat for kids who have a parent with MS. “Attending MS Kids Camp was fun, educational and introduced me to kids that shared the same challenges in life,”
she said. Tiffany plans to attend Florida State University with a focus on criminal justice.
The Society established its scholarship program eleven years ago, and it immediately became a source of great encouragement for families concerned that MS might put college out of reach. This year, more than $1.1 million in awards was presented to over 700 new and renewal recipients nationwide. Applications are evaluated on financial need, academic record, leadership and volunteer activities, a statement of educational and career goals, and letters of recommendation. Applicants are also asked to provide a personal statement describing the impact MS has had on their life. Scholarships range from $1,000 to $3,000 and typically cover one year, although a limited number of awards may exceed this amount.
“For the Bogarty, Isleborn and Kemple families and the hundreds of thousands diagnosed with MS across the country, there are very few known sources of scholarship assistance specially targeted for these families,” said Corrina Steiger Madrid, Chapter President. “MS shouldn’t stand in the way of an education, and we are hopeful this program will give families some relief.”
Information about scholarships for 2015-16 will be available on the National MS Society website on October 1st. For more information, call 1-800-344-4867 or visit www.nationalMSsociety.org/scholarship. n
NORTH FLORIDA CHAPTER ANNOUNCES 2014 SCHOLARSHIP RECIPIENTS ...continued
IN MEMORY OF...Linda Ramp Henry PorterLorriane HorvathSue Mallory
Eleanor CouinardMary Blaha
Claude Lutins, Jr. Crosspointe Church Sunday School Class “Tried and True”
6 MS CONNECTION: SUMMER 2014 7NATIONALMSSOCIETY.ORG/FLN | 1-800-344-4867
MONEY MATTERS
WHERE TO FINDEMPLOYMENT HELPBY STEVEN W. NISSEN, MS, CRC
Are you considering changing jobs? Have you been out of the workforce, but are thinking about returning? Do you have questions about disclosure in the workplace or how to accommodate symptoms on the job?
CALL AN MS NAVIGATORAn MS Navigator can address many of your employment-related questions and refer you to helpful resources, including employment-related publications and videos. Call the Society at 1-800-344-4867 and visit www.nationalMSsociety.org/employment.
JAN CAN HELPThe Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy that can provide technical assistance and support regarding accommodations, the Americans with Disabilities Act, disclosure and self-employment for people with disabilities. Contact JAN at 1-800-526-7234 or visit www.askJAN.org for a wide variety of resources and publications.
IN YOUR STATEEach state has a vocational rehabilitation agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit askjan.org/cgi-win/TypeQuery.exe?902.
ONE-STOP SERVICESThe purpose of local one-stop employment centers is to assist job seekers, with or without disabilities, in finding employment. However, if you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest center, visit www.servicelocator.org.
TARGETED RECRUITMENTSeveral online resources feature employers who are actively recruiting qualified people with disabilities, including:
• Equal Opportunity Publications Career Center - www.eop.com/career.php.
• GettingHired - www.gettinghired.com.
• National Business & Disability Council - www.viscardicenter.org/services/nbdc.
Working with MS is possible and you don’t have to do it alone. Get connected to stay on top of your employment options. n
Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs.
FREE MATTERFOR THE BLIND/HANDICAPPED
4237 Salisbury Road, Suite 406Jacksonville, FL 32216 nationalMSsociety.org/FLN(904) 332-6810
ADDRESS SERVICE REQUESTED
VOLUNTEER SPOTLIGHTIf you have ever attended a National MS Society event in North Florida chances are you have seen Mike Holland behind the camera. Mike began volunteering with the National MS Society in 2002 after chapter staff saw some photos he took of his friends riding in Bike MS. Shortly after the ride he got a call to see if he was interested in shooting another National MS Society event. “At the time, I didn’t even know what MS was,” said Mike. His friends talked him into shooting the event and he has been volunteering for the National MS Society ever since!
Mike says that he did the first event after some convincing from his friends but he continues to be involved with the Society because of the inspiration he receives from people living with MS. “I was amazed at the spirit of people who were struggling to just walk.
They talked to me about how the disease affected their lives, and what the Society does for them,” Mike said. The story of how MS affects people and how the National MS Society is helping to fight this disease matters to Mike and that is what keeps him coming
back year after year, event after event.
Mike is getting ready to retire after many years of federal service. He is looking forward to having more time to pursue his passions, like shooting for the National MS Society. He said that his MS photo site has more than 10,000 free images online
and continuing to build the image library will keep him busy once he retires.
“I’m amazed that after shooting photos for decades I’m still as excited about it as I have ever been,” said Mike. The National MS Society is excited to have him as a dedicated volunteer and looks forward to watching his library grow! n
