ms connection newsletter - national multiple sclerosis … · with multiple sclerosis. anyone...

WINTER 2014 LONG ISLAND CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

04PAST EVENT: BIKE MS: EAST END RIDE

12THANK YOU: VOLUNTEERS

18ADVOCACY: A SIMPLE CHANGE

For more information, page 3

08RESEARCH: TALKING ABOUT STEM CELLS

2013 Holiday Gift Wrapping Social

Join us at this year’s Holiday Gift Wrapping Social

2 MS CONNECTION: WINTER 2014

NATIONAL MULTIPLE SCLEROSIS SOCIETY Long Island Chapter 40 Marcus Drive, Suite 100 Melville, NY 11747 1-800-344-4867

Chapter President: Deborah Carioto Director, Finance: Richard Palese Director, Programs: Jane S. Reilly Director, Development: Natale Raimo

© 2014 National Multiple Sclerosis Society, Long Island Chapter

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.*

A LETTER FROM THE PRESIDENTCONNECT WITH US ONLINE: Long Island Chapter www.nMSsli.org

Like us: NMSSLI

Follow us: longislandms

Dear Friend, As you review this edition of the MS Connection, you will see the many areas that your support continues to make a difference. As we begin our new fiscal year in the Society, we are working toward aligning our resources around 13 defined strategies – aimed at our collectively taking action, in a unified way, to do something about MS now, and end this disease forever. We continue to strive to achieve our vision of a world free of multiple sclerosis.

All of us who work, support or volunteer within the MS Society act with urgency to find solutions and change the world for those living with MS, and together, we achieve results with lasting impact so that:

• Each person with MS can live their best life, with more connections to information, resources, and others with shared experiences. How do we do this? We offer more programs and services than any other MS organization in the world.

• Accelerated research breakthroughs change lives and end MS forever. How do we do this? We are recognized as the catalyst for ALL major advancements in MS – we discovered and drove nerve and myelin repair in MS research.

• Everyone who wants to do something about MS can fuel progress. How do we do this? We raise more than $165 million through Bike MS and Walk MS – two of the top 10 largest events in the nation.

• The voices of people affected by MS are heard and drive change wherever it is needed. How do we do this? More than 75,000 activists across the country have united to secure an additional $25 million in government research funding over the last six years.

Thank you all for your continued support!

Deborah Carioto, Chapter President

3NATIONALMSSOCIETY.ORG | 1-800-344-4867

SAVE THE DATE

HOLIDAY GIFT WRAPPING SOCIAL MONDAY, DEC. 15 The fourth annual Holiday Gift Wrapping Social will take place at the chapter office on Monday, Dec. 15. Your gifts will be wrapped by Long Island Chapter staff while you enjoy light refreshments, arts-and-crafts for the kids and general holiday cheer. Gift wrapping is free of charge, however registration and gift count are required.*

EVENT DETAILS:

• 4 - 7:30 p.m. • Light refreshments will be served• Long Island Chapter Office

40 Marcus Drive, Suite 100 - Melville• *For registration and further information,

please contact Marissa Baum at 631-864-8337, option 2 or [email protected].

Santa visiting and arts-and-crafts at the 2013 Holiday Gift Wrapping Social

PAST EVENT

MS SERVICE DAY On Friday, Oct. 17, the Chapter once again coordinated and implemented the annual Fall MS Service Day. We were able to involve a total of eight families who benefited from our services. Members were presented with mums and pumpkins at their doorstep with the intent of adding a little harvest flair as

we approach the holiday season. The fall festivities were enjoyed by all!

If you and your company are

interested in volunteering for an upcoming MS Service Day, please contact Marissa Baum at 631-864-8337, option 2 or [email protected].

GO GREEN!If you prefer to receive the MS Connection via e-mail, please contact Marissa Baum at

(631) 864-8337, option 2 or [email protected].


PAST EVENT

BIKE MS: EAST END RIDEThe 2014 Bike MS: East End Ride was a huge success! Thank you to the cyclists who rode and raised $179,226, and the volunteers who helped with the event. This year’s ride took cyclists on a “tour of the world” and incorporated the “I Ride with MS” program.

“I Ride with MS” is a special National Multiple Sclerosis Society program that celebrates Bike MS cyclists who are also living with multiple sclerosis. Anyone living with MS and interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride with MS” jersey. Genzyme, MS One to OneTM and Primal Wear are proud supporters of the “I Ride with MS” program, available through all Bike MS events nationwide in 2014.

“I Ride with MS” program participant on the route.

“I Ride with MS” program participant and cyclist.“I Ride with MS” program participant and other cyclists at the finish line.

“I RIDE WITH MS” PARTICIPANTS ARE NOT ONLY COMMITTED TO CYCLING TO CREATE A WORLD FREE OF MS, BUT TO INCREASING AWARENESS.


WAYS TO GIVE

THE MASK OF MSBY MICHELLE MYERS WALL

I was introduced to multiple sclerosis when I met my soon-to-be mother-in-law, Jane. She had experienced a very rapid and severe onset of MS back in the mid-80s. Unfortunately, at that time, many treatments were not available. Even though she was no longer physically able to participate in many activities, she never lost her optimistic outlook and sunny disposition. She was a remarkable woman who was able to find joy under all circumstances. Sadly, Jane died from complications of MS in 2012.

In 2011, a friend told me about an event called MSquerade hosted by the National MS Society’s Emerging Leaders Council in Delaware. I thought the event sounded like a unique opportunity to raise funds and awareness about MS. My husband, Jason, and I attended the event, where I was very moved by graphic posters that featured people with MS wearing masquerade masks. They reminded me that there are two faces to MS: those who have visible symptoms and those who have invisible symptoms, living behind the “mask” of MS. I left that evening knowing that I wanted to become involved with the Society and future MSquerade events. So I immediately joined the Emerging Leaders Council and have been a part of planning MSquerade for the last three years.

THE GIFT OF HOPEI often tell people that MSquerade is like attending a really fun wedding. However, instead of buying a wedding gift, you are supporting a gift of hope for many people living with MS. The event reminds me of my mother-in-law’s outlook on life and that people recently diagnosed with MS can continue to live their lives to the fullest. Eat, drink and be merry! Together at MSquerade, we celebrate with friends and family that advancements in treatments are being made and that the search for a cure is ongoing.

Michelle Myers Wall is an active Society volunteer and Walk MS team captain.

Originally published in the Greater Delaware Valley’s MSConnection newsletter.

Get your mask on at www.msquerade.org, or learn how to create your own DIY event at www.doityourselfMS.org.

MICHELLE AND JASON WALL AT MSQUERADE


PROGRAMS

COUNSELING SERIESADULT FAMILY MEMBERS Melville, Long Island Chapter OfficeMichael Greenberg, ACSWThursdays, 7 - 8:30 p.m. In progress through Dec. 4

ADULT FAMILY MEMBERS Carle Place, 1 Old Country Road, Suite 295Vicki Kulberg, ACSWSaturdays, noon – 1:30 p.m.In Progress: Dec. 6, 13; Jan.10, 17 LIVING WITH MSMather Memorial HospitalOR Conference Room Karen Tuminello, MSWThursdays, 7 - 8:30 p.m.In progress: Dec. 4, 11, 18

HOME BOUND CONFERENCE CALLKaren Tuminello, MSWThursdays, 1 - 2 p.m.Fall session in progress through Dec. 4Winter session: Jan. 22, 29; Feb 5, 12.*Must register EAST END SUPPORT CONFERENCE CALLKaren Tuminello, MSWMondays, 7 - 8 p.m.In progress through Dec. 8

MEDITATE YOUR WAY TO BETTER HEALTH Melville, Long Island Chapter OfficeRuth GellerTuesdays, 7 - 8 p.m. Ongoing LIVING WITH MSLake Ronkonkoma Senior CenterKaren Tuminello, MSWWednesdays, 7 - 8:30 p.m.In progress: Dec. 3, 10, 17 To register for any of these programs, please contact Marissa Baum at 631-864-8337, option 2 or [email protected].

ADVERTISEMENT


RESEARCH

TALKING ABOUT STEM CELLS: PART 1The National Multiple Sclerosis Society recently sat down with Dr. Richard Burt, Chief, Division of Immunotherapy at Northwestern University’s Feinberg School of Medicine in Chicago, Ill., to talk about hematopoietic stem-cell transplantation as a possible treatment for relapsing-remitting MS. An established international researcher, Dr. Burt pioneered the use of hematopoietic stem cells to treat autoimmune diseases.

Could you explain the procedure that you’re testing?

We are testing a procedure called hematopoietic stem-cell transplantation (HSCT). In HSCT, we use standard immune-suppressant drugs in a very short exposure and high dose to knock down the immune system, and then we give the patients back their own immune stem cells that we collected before the procedure.

How does it work?

In multiple sclerosis, the immune inflammation that destroys myelin requires two signals to get started: The first is exposure to myelin or something that looks like myelin, and the second is a danger signal that tells the body

there is a need for an immune attack. If either of these two signals is missing, you will not get the inflammation that causes MS.

In HSCT, we are resetting the immune system. Think of it like a reboot of your computer, wiping the hard drive clean and starting over. The immune system learns all over again which things to fight (pathogens like bacteria and viruses) and which things to leave alone (myelin). We think what happens in HSCT is that the immune response is exposed to myelin in the absence of the danger signal and as a consequence is rendered harmless (tolerant), unable to do any more damage.

What type of MS is most likely to benefit from HSCT?

What we’re doing is stopping the inflammation that you need to treat when the disease is in its inflammatory stage, which occurs in relapsing-


remitting MS. We don’t think this treatment will benefit people with late progressive forms of MS.

OUR EARLY DATA SUGGESTS THAT HSCT DOES SOMETHING THAT SECOND-LINE THERAPY HAS NEVER DONE: IT REVERSES DISABILITY AND SIGNIFICANTLY IMPROVES QUALITY OF LIFE.

Are you still recruiting people for your trial?

The trial is open and ongoing. We are looking at people who have failed a first-line therapy and who have opted for stem-cell transplantation over a second-line treatment. Our goal of the trial is to establish in a randomized trial that this is the proper role for HSCT. Our early data suggests that HSCT does something that second-line therapy has never done: it reverses disability and significantly improves quality of life. (Visit www.nationalMSsociety.org/clinicaltrials for more information about how to participate in clinical studies.)

There are different centers performing HSCT around the world. Is the treatment standardized in any way?

I hope that when our clinical trial data is published, it will help standardize HSCT. We are coordinating the trial at a few other centers around the world, including the University of São Paulo, Brazil, and the University of

Uppsala in Stockholm, Sweden, and the University of Sheffield in the UK.

Are there any risks?

All procedures come with risk, but you can minimize them if you follow proper procedures. For example, in HSCT, there is a risk for infertility, although many trial participants have gone on to become pregnant. As a precaution, we encourage people who are concerned about infertility to consider options such as sperm or egg storage prior to the procedure.

Late complications of this procedure unique to MS that may arise in a small subset of participants are hypo- or hyperthyroidism, or more rarely, a drop in platelets that may require transient medical treatment.

Most people get blood transfusions during this treatment, so there is a small risk of infection with HIV or hepatitis. In my lifetime, I’ve probably transplanted about 1,500 patients and none have had any problem.

Originally published on www.MSconnection.org/blog. Join the conversation about stem cell treatments at www.MSconnection.org.


EMAIL YOUR EMPLOYMENT QUESTIONS Do you have an employment question you would like answered? Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work? If so, feel free to pose your questions directly to this email address: [email protected] and an Employment Specialist will respond within 48 hours.

AVAILABLE RESOURCES

TELEPHONE SUPPORT MS FRIENDS 1-866-MS FRIENDS (673-7436) The MS Friends program connects you with volunteers living with MS. HAVE MS FOR MORE THAN 10 YEARS? Sal, 516-752-1116 If you have been diagnosed with MS for more than 10 years and are having difficulty coping, please call. NEWLY DIAGNOSED? Karleen, RN 516-873-9220 Call any time- leave your name, number, and a message, and Karleen will return your call LIVING, COPING AND UNDERSTANDING MSRosemarie, 516-937-9069 or 917-294-2182 Call anytime. TEENS LIVING WITH MS Participants (ages 13-19) have the opportunity to discuss and share issues of special concern such as new diagnosis, school, coping with additional symptoms or the impact of MS on the family. It is offered one Sunday a month from 5:30- 7 p.m. Call 1-800-344-4867, option 1 to register

LIVING WITH MS: A CONVERSATION Rochelle, 212-222-4635 Monday through Friday Leave a name, number, and message, and Rochelle will return your call.

MAILING LIST UPDATE

If you no longer wish to receive the MS Connection, have a change in address, or

know someone who should be added to the mailing list, please contact Marissa Baum at

631-864-8337, option 2 or [email protected]


SAVE THE DATE

CAN DO MS WEBINAR

TUESDAY, DEC. 9 Holistic Tips to Healthy Eating and ExercisePresented by Can Do MS Programs Consultants: Aliza Ben-Zacharia, DrNP, ANP, MSCN & Amy Dix, MPA-C, MSCS

An important way to stay healthy is to adopt a healthy diet and to exercise regularly. Healthy habits include making creating a balanced diet, implementing an exercise program and also having enough time for relaxation. Nutrition and exercise are the cornerstones of living well and will foster a healthy lifestyle with your MS.

EVENT DETAILS:

• Tuesday, Dec. 9• 8 - 9:15 p.m. Visit Can Do MS’s website to register today!http://www.mscando.org/webinar

Webinar Series ArchiveIf you are not able to view Can Do MS webinars live, then please visit Can Do MS’s webinar archives. Visit http://www.mscando.org/webinararchive.

PROGRAM

SEE ME SMILE “A FEEL GOOD PROGRAM” Generally, when people look good, they tend to feel good. Sometimes the symptoms of MS like blurred vision, numbness, limited mobility, incontinence and fatigue inhibit someone from feeling good about himself/ herself. The purpose of this program is to enrich the quality of life for persons living with MS by improving their self-image and confidence.

The “See Me Smile” program provides a pre-paid gift (tip included) to a salon or barber shop. Once a year, men and women may apply for this need-based program in preparation for a special occasion (e.g. family wedding, bar/bat mitzvah, communion or reunion). Approved participants are responsible for choosing the location and making their own appointment. The chapter may fund up to $100 annually, we do not provide the service.

For more information about the program and its criteria, please contact Marissa Baum at 631-864-8337, option 2 or [email protected].


THANK YOU

VOLUNTEERS Walk MS Team Captain, Justin, decided to get Team Phoenix involved at the 2014 Bike MS: East End Ride. Many of his team members volunteered at a rest stop on the route and a few members participated as cyclists. Justin and his friend Jim took on the tedious volunteer task of setting up and breaking down each rest stop. Here is what Justin had to say about his and his team’s experience.

Why did you decide to volunteer at Bike MS: East End Ride?

Natural instinct- I don’t believe anyone has a right to complain unless you’re willing to do something about it. Volunteering just seems natural, I want to make a difference.

What are the benefits of volunteering as part of a team at an event?

Well, you’re there with your friends and your family, and you’re helping out. You’re with people that you do other things with all the time. You’re not doing it alone.

What type of feedback did you get from your team?

Everybody really enjoyed being part of the event. They all expressed a lot of interest in helping out at future events. If anything, I thought it brought us closer as a team. It was nice being on both sides of the event that day. We were participating and helping to put it on. Three team members rode and they loved the ride. They thought it was just beautiful and are looking forward to raising more money and getting more team members.

What advice would you give to other team captains looking to volunteer?

Volunteering at an event is an amazing way to see how strong your team is. It’s not always about raising money; it’s about helping out, about being part of something bigger than your team. And I have to say it is just as much, and maybe even more, satisfying.

What is the next big endeavor for Team Phoenix?

We are we doing a big fundraiser at Bounce Trampoline Sports. All proceeds will go to the National MS Society, Long Island Chapter. It will be on Dec. 14 from 5 - 7 p.m. Expect to have the time of your life- trampoline bouncing into foam pits, trampoline basketball, trampoline dodge ball and ME! We had a great time last year and people couldn’t wait to do it again.

Thank you Team Phoenix! Team Phoenix Volunteers at the Goldberg’s Deli Rest Stop during the 2014 Bike MS: East End Ride


THANK YOU

VOLUNTEERS Since discovering the Chapter’s volunteer photographer opportunity, Randi has been at every event capturing many

special moments. Her ability stems back to her fashion photography studies at the Fashion Institute of Technology. After working as a fashion buyer, Randi transitioned into a 10-year career in advertising and then worked for a client in health care. Volunteering at the Chapter was her first opportunity to pick up her camera again. At this year’s Walk MS event, Randi had an “aha” moment. “In that moment, I was truly in love with what I was doing- watching people complete their challenge and capturing their triumph. It’s thrilling for me to be the person to document those moments and to hold them forever,” she said.

Later that month, Randi launched a website for her new company, Paparoxxi Event Photography. Its mission is to capture unobtrusive, photojournalistic style photos. We are excited to watch her company grow.

Below, Randi answers questions on her volunteer experience:

Why did you decide to volunteer at the National MS Society, Long Island Chapter?

I was very fortunate in my career and I always wanted to give back to my community. One of my good friends was diagnosed with MS in our 20s. Also, my aunt and my cousin live with MS. This is a place that is near and dear to my heart, a place I want to be a part of.

What are the benefits of volunteering?

For me, there is personal gratification in the people I meet. Having an understanding of the disease from a text book perspective and then seeing it transition into real life is meaningful to me. Meeting the families, learning what their frustrations and obstacles are, and learning what the organization does to help them are why I volunteer.

What advice would you give to other professionals looking to volunteer?

Get involved, pick up the phone! This organization is doing so many great things and always needs a hand. You’ll be treated like family; the staff is very respectful of the volunteers. They are organized, yet relaxed, and you will be invited to engage with others at the events.

We thank you Randi for donating your time and skills to the Long Island Chapter! Photo of a Walk MS participant crossing the finish

line at Jones Beach taken by Randi.


SELF-HELP GROUP

MEETINGS Please contact the peer facilitator before attending.

BAY SHORE/LET’S BE POSITIVE Marie, 631-277-6552 or 516-297-9331 This group is for people with a diagnosis of MS and their current caregiver. Please call anytime if interested. HAUPPAUGE/FREE SPIRITS Tom, 516-220-4869 1st Tuesday or Thursday each month Different restaurant each month Call ahead for date, time and location. HUNTINGTON/WORKING WELL Please call before attending Donna, 516-643-2155 Paul, 631-666-0982 1st Saturday of the month Noon Golden Coach, 350 W. Jericho Turnpike Diner is accessible and reasonably priced (separate checks). GREENLAWN/REACHING FOR THAT SILVER LINING Dennis, 631-495-0512 1st Wednesday of the month 1 - 2:30 p.m. Harborfields Public Library 31 Broadway (small meeting room)

MASTIC BEACH/BALANCING YOUR CHANGES Melissa, 516-991-3653 2nd Thursday of the month 1 - 2 p.m. Last Wednesday of the month 7 - 8 p.m. Grace Lutheran Church 240 Mastic Road MELVILLE/A NEW GENERATION OF MS Jessica, 516-847-5377 1st Monday of the month 7 p.m. Long Island Chapter Office, 40 Marcus Drive, Suite 100 3rd Sunday of the month 7:30 p.m. Latronica Law Building- Suite 215, 64 Division Ave, Levittown This group is focused on facing the everyday concerns of maturing young adults (ranging from ages 18 to early 30s) living with MS. HAMPTON BAYS Theresia, 631-288-2161 1st Monday of the month 7 p.m. MELVILLE/DINNER MEETUP Tracy, 516-792-1567 4th Tuesday of the month 6:30 p.m. Bertucci’s Restaurant 881 Walt Whitman Road


MELVILLE/BUT YOU LOOK SO GOOD Vic, 631-755-1638 3rd Tuesday of the month 6:30 p.m. Morgan Stanley office building 58 South Service Road, Suite 400 SEAFORD/THE CHALLENGERS Jim, 516-826-8514 Nancy, 516-489-9163 Alternate Wednesdays 11:30 a.m. - 2 p.m. St. William the Abbot- meet in the lower church abbey. WANTAGH/MS SUPPORT GROUP Donna, 516-279-8864 Teresa, 516-312-6171 3rd Tuesday of the month 11 a.m. - 1 p.m. St. Frances de Chantal Parish. Go around to the back parking lot and enter school. THANK YOU... Self-help group leaders are people living with MS or caregivers of a person with MS. Our volunteer leaders participate at Walk MS as team captains and are active members of our wellness programs and support counseling services.

If you are interested in becoming a self-help group leader, please contact Jane Reilly at 631-864-8337, option 2 or [email protected].

CLASSIFIEDS

MARKETPLACETWIN XL ADJUSTABLE BEDMotorized, vibrates, head and legs move up and downVery good condition ~ 8 years oldFreeContact Janet at 631-654-5856

PERMOBIL CHAIRMAN WITH CORPUS SEATLift, tilt, recline and leg SupportGood conditionNew batteriesFreeContact Ken at [email protected] or 516-776-8962

JAZZY ELECTRIC WHEELCHAIR6 years oldGood conditionNeeds battery and cleaningFreeContact Eric at 631-738-0663

THERACYCLE 1001 year oldExcellent conditionModified to pedal automatically both forward and backward$2,000Contact Joe at 917-226-4259 or [email protected]


PROGRAMS

RECREATION AND SOCIALIZATIONBAY SHORESouthside Hospital Gulden Pavilion301 W. Main StreetCarol MacBride, CTRSThursdays, 11 a.m. - 2 p.m.In progress: Dec. 4, 18; Jan. 8, 22; Feb. 5, 12 FREEPORT Freeport Recreation Center130 East Merrick Road Teresa Sawicki, CTRS Saturdays, noon - 3 p.m. In progress through Dec. 6

WELLNESSTENNIS- OCEANSIDEPointset Tennis, 3065 New Street516-536-2323Instructor, Tonny Van de PietermanTuesdays - ongoing, please call for session time

AQUATICS – OCEANSIDE Barry and Florence Friedberg JCC15 Neil Court516-766-4341Instructors, Helene Hines and Barbara VitaleMondays, 7 - 8 p.m. - ongoingThursdays, 10 - 11 a.m. - ongoing

AQUATICS- PLAINVIEWMid-Island Y JCC45 Manetto Hill Road516-822-3535Mondays, 10:35 - 11:35 a.m.In progress through Dec. 29Wednesdays, 10:05 – 11:05 a.m.In progress through Dec. 24

FALL YOGA CLASS SCHEDULE Connetquot Public Library760 Ocean Avenue, BohemiaIn Progress: Dec 2, 16

East Meadow Jewish Center1400 Prospect Avenue, East Meadow516-483-4205 Instructor, Shelley Sidelman 516-802-3876Wednesday noon – 1 p.m.In progress through Dec. 3 Winter Session *must registerDec. 10, 17; Jan. 14, 21; Feb. 11; April 1 Millennium Diner156 East Main Street, Smithtown631-724-5556Instructor, Shelley Sidelman 516-802-3876Friday 10 - 11 a.m.In progress through Dec. 5 Winter Session *must registerDec. 12, 19; Jan. 16, 23; Feb. 13; April 3 To register for any of these programs, please contact Marissa Baum at 631-864-8337, option 2 or [email protected].


OTHER WELLNESS

YOGA PROGRAMSNo prior experience necessary. Participants must be ambulatory. Please arrive 10 - 15 minutes prior for the class to begin on time. WOODBURYAbsolute Yoga Studio 1 Guilles LaneOwner/Instructor, Leslie Luft516-682-YOGATuesdays, 12:30 – 1:45 p.m.Thursdays, 11 a.m. – 12:15 p.m.Instructor, Lisa Bachrach-Zeankowski*

Absolute Yoga Studio will be continuing its yoga programs for individuals with MS during the winter months. There is a nominal fee for the winter sessions, which is payable directly to the studio. Please contact the studio for pricing and more information.

*Lisa is a 200 hour certified yoga instructor and Reiki practitioner, who is also living with multiple sclerosis. Please contact Lisa with any questions at 516-287-9747 or [email protected].

WE WANT TO HEAR FROM YOU

If you have any suggestions for stories to include in future editions of the MS

Connection, please contact the Chapter at 631-864-8337, option 2

HOPE FITNESS Burn calories, lose weight, increase flexibility, strengthen muscles, reduce stress, increase self-esteem and increase socialization.

NASSAU LOCATION2750 N. Jerusalem Road, North BellmoreFridays, 11:30 a.m. – 12:30 p.m.In progress: Dec. 5, 12, 19

SUFFOLK LOCATION3140 Veterans Highway, BohemiaMondays, 10:45 a.m. – noonIn progress: Dec. 1, 8

There is a $50 member fee for this cost- sharing program. Advance registration is required. To register, please contact Marissa Baum at 631-864-8337, Option 2 or [email protected]

DO-IT-YOURSELF FUNDRAISING

Do-It-Yourself Fundraising is an exciting opportunity for people with a commitment to the MS movement to raise awareness and

critical funds in new and creative ways. For more information visit

www.DoItYourselfMS.org or contact the Development Team at 631-864-8337, option 2.


ADVOCACY

A SIMPLE CHANGEBY HELEN MARIE RUSSON

One of the most challenging things about multiple sclerosis is its unpredictability. Although we’ve witnessed marvelous medical breakthroughs, none of us knows the course our disease will follow. For those

of us who require assistive technology (such as specialized wheelchairs and scooters), major improvements in these devices now allow us to live much more independently. Plus, these devices are covered by Medicare. But then what happens when we want to go outside? Incredible as it sounds, Medicare will not cover the use of this assistive equipment when we leave our homes to work, visit friends or shop.

That’s because Medicare is currently hamstrung by a 40-year-old policy known as the “in-the-home” restriction. The Medicare benefit was originally intended to cover devices used outside of a hospital or institution; since then, it’s been interpreted so that Medicare will only reimburse for devices needed for in-home use. The real-world impact of this policy is that Medicare will not pay for mobility devices that people use to remain active members of their communities outside the confines of their homes. Since many of us who live with MS depend on Medicare, this issue has become very personal indeed.

Last March at the National MS Society’s Public Policy Conference, MS activists advocated for a federal bill that would improve access to individually configured manual and power wheelchairs, adaptive seating systems and alternative positioning systems, and other specialized equipment—otherwise known as complex rehabilitation technology or CRT. The Ensuring Access to Quality Complex Rehabilitation Technology Act would also change the antiquated interpretation of the Medicare law for CRT products and allow Medicare to reimburse for CRT products used outside of the home. Under this act, CRT suppliers would also be required to be accredited by an independent organization and have qualified staff to service and repair beneficiaries’ CRT products.

Not surprisingly, this bill has bipartisan support in the House and Senate. With so many unanswered questions surrounding the more progressive forms of MS, it’s nice to come across an improvement that is so stunningly simple.

Helen Marie Russon is a National MS Society volunteer and an attorney who teaches disability law and investigates discrimination claims in Oregon.

Originally published at www.defeatmsblog.com.

GET INVOLVEDTake action on this and other issues important to people affected by MS. Call 1-800-344-4867 or sign up at www.nationalMSsociety.org/advocacy.


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