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INSIDE THIS ISSUE
MS CONNECTIONMID FLORIDA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | FALL 2012
INSIDE THIS ISSUE
MS CONNECTIONMID FLORIDA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | SUMMER 2013President’s ColumnTraversing a new terrain can be a challenging endeavor. As I reflect back on my life, I recall with a lump in my throat the day I waved good-bye to my parents as they drove away from my college dorm after helping me unpack and settle into my new surroundings to begin my college career. I realize now the many sacrifices they made that helped me get my start in life. Without their help and a generous scholarship, college would not have been within my reach. They understood that each new beginning should be launched on solid ground, which eased the uncertainty of many of the decisions I would have to make as a young woman starting out on my own.
Recently the Financial Assistance Committee of the Mid Florida Chapter reviewed the applications of seventeen college bound students, who were requesting scholarship monies in order to be able to enter their freshman year in college with funds sufficient to cover the spiraling costs of tuition, room and board and books. All of the applicants were outstanding students with high GPA’s and a plethora of hours devoted to significant volunteer work in their respective communities. Each of them had a compelling personal story to share as each of them had grown up in a family impacted by MS.
We are honored to announce the four finalists, who have each been awarded a scholarship from
the Chapter: Lindsay R. Alexander from Orlando was a 4.0 student at Boone High School in Orlando and is attending the University of Florida where she will study Journalism. Lindsay says she would not be the person she is today without her Mom and that her Mom would not be the person she is without MS. Growing up with a mother who had MS taught Lindsay “to live life with strength and not in fear of things that cannot be controlled.” Lindsay envisions a world when her “sweet, florally dressed mother is standing on two feet wearing a military uniform and combat boots, same pink lip stick, same smile, but looking fierce. The sun is setting and her small silhouette stretches toward the horizon. MS is obliterated; the battle is over. She won.”
Omar R. Mills-Seivwright is attending Stetson University to study Bio Chemistry after achieving a 3.5 in his undergraduate studies at Minneola High School in Minneola. Omar assumed the ultimate leadership role of “man of the house” at the young age of 16 when he began working outside the home in order to support his mother, who was diagnosed with MS when he was in the 5th grade. Omar says that the experience of supporting his mother both emotionally and financially shifted his ambition in life “to help other young people through their adversities by equipping them with the tools necessary to overcome life’s obstacles.” He believes that
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Annual MeetingPAGE 3
Self Help GroupsPAGE 4-5
Golf MS ClassicPAGE 6
MOVING TOWARD A WORLD FREE OF MS | FALL 2013
CONTINUED FROM COVERwhat he experienced growing up will help him relate better to others who are growing up in circumstances similar to his own.
Jacob M. LaJoie, another 4.0 student, graduated from Winter Springs High School and is attending the University of Central Florida where he will study Electrical Engineering. Jacob says that it is hard for him to recall a time in his life when MS was not a part of it. He says that his mother, who has MS, has refused to let the disease slow her down. Because of his mother’s illness, Jacob says “he has learned to be very understanding of people with medical difficulties.” Jacob’s family has participated in Walk MS for over a decade with his mother serving as the Walk Ambassador for two years. Both Jacob and his brother attended Kid’s Camp and in his words “so often” that he was able to explain to his peers exactly what the disease was all about.
Jessica N. DiMaria with a GPA of 3.5 received her diploma from Flagler Palm Coast High School in Palm Coast and is attending the University of Tampa where she is studying Marine Biology. Jessica says she grew up a little faster than other young people her age because she had to help care for her younger sibling who was only two when her mother was diagnosed with MS. She says that she has learned “through this disease that we should always dance through life” by taking “all the opportunities you’re given and enjoying this incredible journey you’re on.” Jessica looks at MS as a gift – a disease that has brought many wonderful people into her life and one that has made her the strong person she is today. Jessica and her family have been quite involved with the Mid Florida Chapter – Jessica serving on the National MS Society Teen Council and as a speaker at Kid’s Camp – and her Mom as the Flagler County Self Help Group Chair.
Please join us as we congratulate these students on their achievements and wish them well as they explore the many opportunities that lie ahead.
Carroll FranklinPresident, Mid Florida Chapter
2 JOIN THE MOVEMENT: nationalMSsociety.org
© 2013 National Multiple Sclerosis Society, Mid Florida Chapter
1-800-344-4867Publication of the National MultipleSclerosis Society
Mid Florida Chapter2701 Maitland Center Pkwy. Suite 100Maitland, FL 32751
Tampa Office4919 Memorial Hwy., Suite 103Tampa, FL 33634
Carroll FranklinChapter President
Heather CarelliDevelopment Manager
Gabriela CasadoDevelopment Manager
Patricia ChuckPrograms & Services Manager
Linda GurianPrograms & Services Contractor
Mary HealeyDevelopment Coordinator
Lisa OsborneAdministrative Assistant
Mike RobertsonDevelopment Coordinator
Lisa RomeroDirector of Operations
Stephanie WalgamottDirector of Marketing & Special Programs
Find Us Online:www.nationalmssociety.org/flcwww.facebook.com/nmssflcwww.twitter.com/nmssmidflorida
MID FLORIDA CHAPTER INFO:
Edited by Stephanie Walgamott
TOLL FREE NUMBER 1 800 344 4867 | 3
Walk this Way: Using Walking poles
Potential tools in the walking arsenal that people with MS might want to consider are walking poles. These are adjustable-length ski pole–like shafts made of very light metal (such as titanium, carbon fiber or aluminum) with handles (called grips). Many have adjustable
wrist straps and tips designed for walking on flat, steep or rugged terrain. Because they are used in pairs, poles—which lie between a cane and a walker on the continuum of assistive devices—offer increased balance, steadiness and support, according to Sue Kushner, PT, MS, associate professor of Physical Therapy, Slippery Rock University, Penn., who has spent much of her career working with people who have MS. “You can move a little faster, because bilateral support gives more stability and speed,” she said.
Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees,
feet, hip and back. Less stress on the lower body translates into less fatigue, a frequent symptom of MS.
“If you use poles instead of a cane, you may conserve energy,” Kushner said.
Jayah Faye Paley grew up in Florida, and when she moved to northern California in her 30s, took up mountain hiking. She found she “didn’t have the natural footing of people who grew up with it.” She does not have MS.
(Continued on next page.)
liVing With Ms
pole primer
“Talk to your physical therapist before you try them,” physical therapist Sue Kushner cautioned. Then choose poles based on your height, weight, hand size, issues (balance, for example) and your fitness or mobility goals.
“Make sure they’re the proper height—about waist level, a little higher than a cane—and a comfortable weight. If you’re using them all day, you do care about their weight, especially if you have any weakness in your wrist muscles,” Kushner added.
One drawback is that you can’t carry much with poles in both hands. However, a backpack is one possible solution.
Good poles cost about $90 to $140 and should last a lifetime.
Courtesy of Jayah Faye Paley,www.PolesForMobility.com
Annual Meeting & Research Symposium
Saturday, October 19, 2013 at 9:00 AM
Enjoy a vendor fair and continental breakfast followed by an educational presentation on the latest in MS research.
The 2013 Mission Awards and achievements will be presented and the 2014 Board of Trustees will be elected.
Space is limited! Please register at 1-800-344-4867.
The Lakeland Center Sikes Hall701 W. Lime StreetLakeland, FL 33815
Day of Discovery Saturday, October 19, 2013 at 8:30 AM
Bring the family for a day of learning, connecting, and having fun!featuring Randy Schapiro, MD
and Kristy Salerno Kent $10 per person includes buffet breakfast, vendor fair, educational
presentation, and activities for kids followed by admission to SeaWorld.
Registration opens on November 1 at 1-800-344-4867.
Ports O’ Call
Mid Florida Chapter Self Help Groups
Group Name Location Meeting Times Contact
Brevard County Central Cocoa Sunday Group
Cocoa Public Library 308 Forrest Avenue Cocoa, FL 32922
2nd Sunday of every month, 2:00 pm
Kevin (321) 636-0235 [email protected]
Brevard County Eau Gallie Group
Healthfirst Gateway Center 1223 Gateway Dr Melbourne, FL 32901
4th Sunday of every month, 2:00 pm
Kevin (321) 636-0235 [email protected]
Citrus County Saturday Morning Group
6760 N. Lecanto Highway Beverly Hills, FL 34465
1st Saturday of every month, 11:00 am
Shana (352) 422-5868 [email protected]
Hillsborough County (Central) Tuesday Evening Group
Lake Magdalene Church - Heritage Hall 2902 W. Fletcher Ave Tampa, FL 33618
1st Tuesday of the month, 7:00 pm
Rita (813) 961-5510 [email protected]
Hillsborough County (South Tampa) Tuesday Evening Group
Knox Hall- Room 156 Hyde Park United Methodist Church 500 W. Platt St Tampa, FL 33606
2nd Tuesday of every month, 6:30pm - 8:30pm
Florence (813) 390-6937 [email protected]
Lake County Wednesday Morning Group Mighty Survivors
South Lake Hospital 1099 Citrus Tower Blvd. Clermont, FL 34711
4th Wednesday of every month, 10:00 am
Aimee(352) 242-2350 [email protected]
Manatee County "Multiple Sclerosis Social Group"
Fia’s Café 3633 Cortez Road Bradenton, FL
2nd Tuesday of each month, 12:00 pm September through May
Patty (941)747-8866 [email protected]
Marion County “Multiple Sclerosis Villages People”
La Hacienda Center 1200 Avenida Central Lady Lake, FL 32159
3rd Tuesday of every month, 10:00 am
Mary (352)391-9707
[email protected] Marion County “MS Caregivers”
La Hacienda Center 1200 Avenida Central Lady Lake, FL 32159
4th Tuesday of every month, 10:30 am
Barb (352)259-8147
Orange County (includes Seminole County) Sunday Afternoon Group
Winter Park Hospital Medical Library 200 North Lakemont Winter Park, FL
1st Sunday of the month, 2:00 pm September through June
Lourdes (407) 810-9063
Orange County "Orange A.N.T.S." Support Group
Dr. Phillips Hospital Atrium Conf. Room 9400 Turkey Lake Rd Orlando, FL 32819
1st Monday of every month, 6:00 pm
Jeff (407) 891-2327 [email protected]
4 | JOIN THE MOVEMENT: nationalMSsociety.org
liVing With Ms
One day she met a fellow using poles, who was, she said, “poetry in motion on the trail.” She was so taken with both him (they married in 2003) and the poles that she made a career of teaching people to use them optimally. An ACE-certified personal trainer, Paley has created two training DVDs, including one for people with mobility challenges. “With minimal training—usually less than an hour—you can walk more fluidly and with a natural pattern because you recruit and strengthen the muscles that support and elongate the spine,” she said.
Other benefits, Paley added, are confidence and focus. “You are walking for exercise, not just strolling—the poles are consistent reminders to move better.”
Walkers: What’s yoUr bad Weather plan?
if walking is your favorite exercise, now is the time to plan ahead so winter doesn’t disrupt your regimen. sue kushner, pt, Ms, recommends the following:
• in snowy or icy weather, avoid walking outdoors—even to take Fido out. a sudden tug on a slick sidewalk can send you flying. “even a little fall can really set you back,” kushner said. “if you twist an ankle or tear a ligament, it can lay you up for a couple of months, plus you’ll have to do rehab. if you’re already weak, it might even put you into a wheelchair.”
• Consider instead the great indoors! Mall-walking. nearby gyms or yMCas. some offer monthly memberships that you can use during winter weather. public schools or colleges. Call to find out if they are open to walkers in the evening.
• Consider using a walking device for extra assistance when it’s cold.
• always choose supportive footwear with a good tread.
• take advantage of clear days to get out; look for parks where walking paths have been cleared.
• depending on your balance and skill level, cross-country skiing or ice skating can be fun and challenging ways to take advantage of winter weather.
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®
Mid Florida Chapter Self Help Groups
Osceola County "Osceola A.N.T.S." Support Group
KUA 1701 Carroll St. Kissimmee, FL 34741
3rd Thursday of every month, 6:00 pm
Jeff (407) 891-2327 [email protected]
Pasco County West Pasco MS Support Group
Medical Center of Trinity 9330 State Road 54 New Port Richey, FL 34655
Second Tuesday of every month, 12:00 noon
Susan (727) 372-1568 [email protected]
Pinellas County (Central) Tuesday Evening Group
HealthSouth Rehabilitation Hospital of Largo, Classroom C 901 Clearwater/Largo Rd., Largo, FL 33770
2nd Tuesday of the month, 6:30 pm January through November
Marie (727) 742-3237
Pinellas County (South) Tuesday Morning Group
St. Marks United Methodist Church 6801 38th Avenue N St. Petersburg, FL 33709
1st Tuesday of the month, 10:00 am January through November
Lynn (727) 343-8034 [email protected]
Polk County (East) Thursday Morning Group
Abiding Lutheran Church 1910 Havendale Blvd NW Winter Haven, FL
3rd Thursday of every month, 10:30 am
Jeff (863) 206-0023
Sarasota County Thursday Noon Group
HealthSouth Rehab 6400 Edgelake Dr. Sarasota, FL 34239
1st Thursday of every month, 12:30 noon
Lee (941) 924-6975 [email protected]
Sarasota County "Friends of Hope"
Sarasota Memorial Healthfit 5880 Rand Blvd Sarasota, FL 34238
3rd Thursday of every month, 6:00 pm
Chris (941) 276-2501 [email protected]
Volusia County "Wave Riders" Support Group
DSIL 119 S. Palmetto Ave, #118 Daytona Beach, FL
3rd Tuesday of the month, 12:30 pm September through May
Gabrielle (386) 756-6961 [email protected]
Volusia County "MSKeteers" Support Group
Please call to confirm location and time
3rd Saturday of the month, 1:00 pm August through May
Nayda (386) 789-0332 [email protected]
Self Help Group information is also available on the Mid Florida Chapter website at www.nationalmssociety.org/flc.
TOLL FREE NUMBER 1 800 344 4867 | 5
pediatriC Ms stUdies reCeiVe Federal sUpport
The Society’s network of Pediatric MS Centers has been awarded a five-year grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without MS for a single visit to one of 10 centers around the country—
in California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email [email protected] or call 415-514-2476. For more information about pediatric MS, visit www.nationalMssociety.org/pediatricMs.
CCsVi stUdies—one-year UpdateThe first-year progress reports from seven Society-funded studies of CCSVI, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society.
The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVI and better understand its relationship to the MS disease process.
The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVI is safe and effective for people with MS.
In the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit www.nationalMssociety.org/ccsvi.
neWs
Children with MS attend Champ Camp, held at Camp For All in Burton, Tex. Photo: Chase Shull Artisan Portrait Studios, courtesy of the South Central Region.
get the latest!
Visit www.nationalMssociety.org/signup to sign up for monthly MS eNEWS.
Friday, October 25, 2013 8:00 AM Shotgun Start Falcon’s Fire Golf Club, Kissimmee, Florida
Great day of golf, breakfast, bbq lunch, and awesome prizes!
The Golf MS Classic has raised more than $1 million dollars for MS research and local programs. Help us drive closer to a cure!
$250 for a single player & $1,000 for a foursome. Contact [email protected] for more details or register at www.golfeventpro.com.
SAVE THE DATE FOR WALK MS 2014 Saturday, March 1, 2014
Ormond Beach: Rockefeller Gardens Park Sarasota: Lakewood Ranch @ Main Street
Saturday, March 15, 2014
Largo: Central Park Brevard: Church @ Viera
Saturday, March 29, 2014
Lady Lake: The Villages Polo Field
Sunday, April 6, 2014
Orlando: Baldwin Park @ Harbor Park
Saturday, April 26, 2014
Tampa: Lowry Park Zoo
midfloridaMSwalks.org
Mid Florida2014
SAVE THE DATE FOR WALK MS 2014 Saturday, March 1, 2014
Ormond Beach: Rockefeller Gardens Park Sarasota: Lakewood Ranch @ Main Street
Saturday, March 15, 2014
Largo: Central Park Brevard: Church @ Viera
Saturday, March 29, 2014
Lady Lake: The Villages Polo Field
Sunday, April 6, 2014
Orlando: Baldwin Park @ Harbor Park
Saturday, April 26, 2014
Tampa: Lowry Park Zoo midfloridaMSwalks.org
Mid Florida2014
Lakeland: Lake Parker Park
RESEARCH
6 | JOIN THE MOVEMENT: nationalMSsociety.org
neWs
soCiety president and Ceo JoyCe nelson to retire
After 28 years with the National MS Society, and seven as its president and CEO, Joyce Nelson is retiring as of October 1, 2011. “Although the time has come for me to formally pass the
torch of leadership to another, my love for this work and for the people with whom I’ve served will never fade,” she said. “People living with MS have touched my life every day for the past 28 years, providing inspiration for the important work to be done. When the final answers are found and the race is won, I can assure you that I will be there with you to celebrate a world free of MS.”
Nelson began her Society career in 1983 as a READaTHON coordinator in the Northern California Chapter and rose through chapter and national leadership positions to become the Society’s president and CEO in 2004.
Among her many accomplishments, Nelson:
• Founded Fast Forward, a research subsidiary of the National MS Society that supports clinical research and fast-tracks clinical trials of MS therapies and treatments;
• Established six pediatric MS Centers of Excellence;
• Created the MS Navigator™ program to provide personal assistance to people with MS;
• Expanded the Society’s fellowship program to
find and support young scientists doing essential MS research;
• Increased the Society’s advocacy efforts through the establishment of the MS Caucus in Congress;
• Inaugurated financial assistance programs in all Society chapters; and
• Expanded the nationwide scholarship program.
“I know you will join me in wishing Joyce Nelson and her family all the best as they enter this new phase of their lives,” said Thomas Kuhn, chair of the National Board of Directors of the National MS Society.
liVe FUlly, liVe Well – the holistiC approaCh to MsA new multimedia wellness program, a collaboration between the Society and Can Do MS, launched this June. Called live Fully, live Well, it is designed for people with MS and their support partners, and deals with a wide range of topics covering health, relationships and quality of life. Through December 2011, live Fully, live Well is offering in-person workshops, videos, and monthly webinars presented by physical and occupational therapists, MS nurse educators, dietitians and other MS experts. The June and July webinars are already archived on the National MS Society website and can be accessed at any time. All the subsequent webinars will be available on the Society’s website shortly after the program’s air date. For details and schedules from August on, log on to www.nationalMssociety.org and search for “live fully live well.” To register for in-person workshops, call Can Do MS at 1-800-367-3101, or email [email protected].
Friday, October 25, 20138:00 AM Shotgun StartFalcon’s Fire Golf Club
Kissimmee, FloridaGreat day of golf, breakfast, bbq lunch and awesome prizes!
The Golf MS Classic has raised more than $1 million dollars for MS research and local programs.
Help us drive closer to a cure!$250 for a single player & $1,000 for a foursome.
Contact [email protected] for more details or register at 407-478-8882.
REGISTRATION IS NOW OPEN! Join us February 28 to March 2, 2014
• Walk 50 miles in 3 days - through historic Charleston, South Carolina, over the incredible Arthur Ravenel Jr. Bridge, and around the beautiful Isle of Palms.
• Raise $1,500 for the National Multiple Sclerosis Society - help 400,000 people in the United States living with this disabling neurological disease.
• It’s no easy feat, but we are with you every step of the way - we help you train for the physical challenge and meet the $1,500 fundraising minimum.
1-800-344-4867 • www.challengems.org
Challenge Walk MS: Charleston Challenge
The Citrus TourApril 12-13, 20144
Bike MS: the citruS tour april 12-13, 2014 » 2 dayS » 175 MileSregiSter today! » nationalMSSociety.org/citruStour or call 1.800.344.4867challenge yourself to 175 miles from historic Bok tower in lake Wales, through Florida’s famed orange groves, to the luxurious caribe royale resort in orlando and back!
cyclist, volunteer, & sponsorship opportunities available.
For more inFo, please contact [email protected]
adVoCaCy
TOLL FREE NUMBER 1 800 344 4867 | 7
Up-to-date FaQs on the aFFordable Care aCtTo help people with MS understand the Patient Protection and Affordable Care Act, or ACA, signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at www.nationalMssociety.org/aCaFaQ.
On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out?
The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues.
As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.
neW ada rUlesMore than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities.
The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission.
Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function).
The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers.
Learn more at www.ada.gov. Also visit the ADA National Network at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in our area.
NON-PROFITORGANIZATION
U.S. POSTAGEPAID
Tampa, FLPermit # 523
Mid-Florida Chapter
4919 Memorial HwySuite 103Tampa, FL 33634
CALL TO ACTION:Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms.
If you or someone you know has MS, please contact the National MS Society at nationalMSsociety.org or 1-800-344 -4867 to learn more.
DISCLAIMER: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 Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.