Ms ConneCTion M s ConneCTion MS CONNECTION neW sLeTTer

SUMMER 2016LONG ISLAND CHAPTER

02VOLUNTEER SPOTLIGHT

03SCHOLARSHIP RECIPIENTS

05BECOME AN MS ADVOCATE

JOIN US FOR BIKE MS: EAST END RIDE SATURDAY, SEPTEMBER 10, 2016

Bike MS- Team Fat Frogs, September 2015

DONT JUST RIDE, BIKE MSRide to end MS by choosing from 25, 50 and 100 mile route options through the

beautiful South Fork of Long Island. The ride is supported by rest stops, bike mechanics, riding marshals and support vehicles. At the end of the day, enjoy your accomplishment

during the Finish Line Celebration at the Southampton Elks Lodge. Register online at www.bikeMS.org and receive $10 off the registration fee

with code: MS CONNECTION. Questions? Call 631-864-8337 option 2 and ask to speak with the Develpment Department.

08SELF-HELP GROUPS

TogeTher We are sTrongerIt will take all of our passion and determination to end MS forever. Your fundraising drives

groundbreaking research, provides life-changing programs and guarantees a supportive community for those who need it most. Your participation in Walk MS will help ensure no

one ever has to be diagnosed again. Register and start raising much-needed funds today!

Register at www.nMSsli.org or call 631-864-8337, option 2

WinTer 2015/2016 Long isLanD ChaPTer

02VoLunTeer sPoTLighT

03CaLenDer of eVenTs

04MeeT The aTTorney

one Day. ThousanDs of PeoPLe. WaLk To enD Ms.

Join us aT WaLk Ms Jones beaCh, fieLD 5saTurDay, May 21, 2016

FALL 2014 LONG ISLAND CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

04MS SERVICE DAY

13A DUAL PERSPECTIVE

18PROMISING MS TREATMENTS

For more information, page 3

08WALK MS THANK YOU

NEW FOR 2014:TAKE A TOUR OF THE WORLD WITHOUT LEAVING THE SOUTHFORK!

2012 Bike MS: East End Ride Participants

BIKE MS: EAST END RIDE » SEPTEMBER 7, 2014 » 1 DAY » 25-100 MILES

09seLf heLP grouPs

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04MeeT The aTTorney





INSIDE THIS ISSUE

04MS SERVICE DAY




08WALK MS THANK YOU




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04MeeT The aTTorney





INSIDE THIS ISSUE

04MS SERVICE DAY




08WALK MS THANK YOU




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2 MS CONNECTION: SUMMER 2016

NATIONAL MULTIPLE SCLEROSIS SOCIETY Long Island Chapter 1 Huntington Quadrangle, Suite 1S06 Melville, NY 11747 1-800-344-4867

© 2016 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.*

CONNECT WITH US ONLINE: Long Island Chapter www.nMSsli.org

Like us: NMSSLI

Follow us: longislandms

VOLUNTEER SPOTLIGHT LOOKING TO VOLUNTEER WITH THE NATIONAL MS SOCIETY?

HERE ARE FIVE HELPFUL RESOURCES TO GET INVOLVED.

The National MS Society is always looking to connect volunteers with available opportunities throughout the organization. Without volunteers, we would not be able to help people affected by MS live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever. Our goal is to thank and encouage current volunteers, as well as create a space for new vol-unteers to find their passion within the Society. Did you know the National MS Society, LI Chapter website has great resources to help you get involved? Visit http://www.nationalmssociety.org/Get-Involved/Volunteer.1.Find Opportunities In Your Area: When you visit the website, simply type in your zip code and find the current volunteer opportunities and events going on in your area. If you are interested in signing up for a specific volunteer opportunity, click on ‘Sign Up’ and read about the volunteer posi-tion details, as well as find the staff member’s contact information.2.Volunteer Information: When you visit the ‘Volunteer Information’ tab, you will learn about MS and the Society, as well as have the opportunity to watch a Volunteer Information/Orientation Video. 3.Spread the Word: Visit the ‘Volunteer Information’ tab, where you will find resources you can utilize to help create awareness about the value of vol-unteering for the Society. This webpage provides volunteer email signatures, as well as specific posts to share on Facebook, Twitter and Instagram.4.Become a Volunteer: The ‘Become a Volunteer’ tab, provides a National MS Society Volunteer Application Form on the website to fill out and com-plete. This form is extremely helpful in identifying the type of volunteer work you are interested in, the type of skills you may wish to share and what motivates you to volunteer with the Society. Once this online application is complete, you will be contacted by a staff member to discuss the available opportunities and together decide the volunteer position that will best fit your needs.5.Volunteer Recognition: The ‘Volunteer Recognition’ tab, allows you to learn more about the “Volunteer of the Year”, “Philanthropist of the Year”, “Lifetime Achievement”, and “Hall of Fame Inductees”.

Article Continues on Page 10..

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

SCHOLARSHIP RECIPIENTS

CONGRATULATIONS TO THEMINDY B. ALPERT ACADEMICSCHOLARSHIP RECIPIENTS

We are proud to award academic scholarships to the following four students: • Luis Alvarez (Amityville)• Christopher Barulic (New Hyde Park)• Brooke Cohen (Valley Stream)• Melanie Davidson (Bayshore)

This scholarship is made possible by Mindy Alpert, an active Walk MS Team Captain (Gifted and Talented), National Board Member, International Board Member, and local Long Island Chapter Board Member.

2016- 2017 application information can be found after October 1, 2016. Please visit www.nMSsli.org.

GO GREEN!If you prefer to receive the MS Connection via

e-mail, please contact Nick Bove at (631) 864-8337, option 2 or

[email protected]

PROGRAMS

COUNSELING SERIESADULT FAMILY MEMBERSPhone Support GroupTuesdays, 7 - 8 p.m.July 12 - August 2Contact Karen Tuminello, MSW for details631-589-3901

BUT YOU LOOK SO GOODSyosset Hospital, Doctors LoungeMichael Greenberg, ACSWSaturdays, 10 - 11:30 a.m.In Progress - July 16

HOMEBOUND CONFERENCE CALLKaren Tuminello, MSWThursdays, 1 - 2 p.m.July 14 - August 4Contact Karen Tuminello, MSW for details631-589-3901

MEDITATE YOUR WAY TO BETTER HEALTHSt. Matthew, R.C. Church35 N. Service Road, Dix Hills, NYThursdays, 7 - 8:15 p.m. ongoingContact Ruth Geller at 631-439-2913

To register for these programs, please contact Nick Bove at 631-864-8337 option 2 or at [email protected].


PROGRAMS

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

AQUATICS- MID-ISLAND Y-JCCPlainview45 Manetto Hill Road516-822-3535Mondays and Wednesdays9:15 - 10:15 a.m. - ongoing

COMING THIS FALL- MID-ISLAND Y-JCCNew! Wellness Aquatics PlusImprove coordination and boost your mood with twice weekly sessions of water aerobics plus a third day of informative wellness lectures and interactive therapies. A 6 week holistic program that combines exercise with a sampling of disciplines such as meditation, nutrition, and art/music therapy. Just the added PLUS you are looking for!

For more information call Barbara Sachs- Traina 516-822-3535 ext. 317 or email [email protected]

YOGA

East Meadow Jewish Center1400 Prospect Avenue, East Meadow516-483-4205 Instructor, Shelley Sidelman 516-802-3876Wednesdays, 12 – 1 p.m.In Progress - August 17

Millennium Diner156 East Main Street, Smithtown631-724-5556Instructor, Shelley Sidelman 516-802-3876Fridays, 10 - 11 a.m.In Progress - August 19

Connectquot Public Library760 Ocean Avenue, Bohemiatentative time is 12 - 1 p.m.Tuesdays, July 26 - August 23*Please check the website for session informationwww.connetquotlibrary.org or contact instructor, Karen Scher, at [email protected]


BECOME AN MS ADVOCATE Hello! My name is Jennifer Muthig and I am the New York State Advocacy Director for the National Multiple Sclerosis Society. I began the position in January and I look forward to connecting with each of you to make our issues stronger before elected officials. I’m excited to be here and working with the Society as we bring our important policy goals to the attention of key decision makers.

I had the honor of attending the NMSS 2016 Public Policy Conference, where it was appro-priately titled “together we are stronger.” We had an awesome group from New York that attended including your very own Co-Chairs of the Government Relations Committee (GRC) Jessica Nofi and Bill Seegull.

The Conference focused on three key issues: MS Research Funding, The Advancing Research for Neurological Diseases Act and Access to MS Medications. After our trainings were complete, we went to Capitol Hill to meet with targeted members of Congress and our two federal senators.

We met with Senator Schumer, who during the meeting agreed to sign on to our priority legislation, the Advancing Research for Neu-rological Diseases Act (S.849). This bill would create a centralized data collection system at the Centers for Disease Control and Preven-tion (CDC) that will track and collect data

on the epidemiology of neurological diseases, including MS. Information collected will provide a foundation for evaluating and understanding many factors, such as geographic clusters of MS, variability in racial and ethnic risk, and healthcare practices and utilization.

In addition we were also able to secure a new member to the Federal MS Caucus, Congressman Sean Patrick Maloney. Due to our meetings on the hill, two more members of Congress from New York signed onto our fund-ing request for the National Institutes of Health. These funds will analyze how the immune system responds to different stimuli while providing the basic research to develop the MS therapies.

We had a great time networking, team building and advocating. I look forward to many more successful conferences. Do you want to get involved in Advocacy with the Society? Do you have more questions about the Government Rela-tions Committee (GRC)?

What is the GRC? The GRC is the governing body of the chapter that determines the direction we take with advocacy, legislation and government affairs. It’s a great way to build new relationships with elected officials and our fellow peers.

What does a GRC member do?

- Engage in strategic conversation to help deter-mine activism, priorities and goals, reviewing prog-ress throughout legislative session and evaluating outcomes of strategies and tactics.

6WELLNESS

YOGA PROGRAMSNo prior experience necessary. Participants must be ambulatory. Please arrive 10-15 minutes prior for the class to begin on time.

WOODBURYAbsolute Yoga Studio1 Guilles Lane516-682-YOGA

Tuesdays, 12:30 - 1:45 p.m.Owner/Instructor, Leslie Luft

Thursdays, 11 - 12:15 p.m.Instructor, Lisa Bachrach-Zeankowski*

There will be a small fee during the summer months. Please contact Absolute Yoga Studio for 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].

MS CONNECTION: SUMMER 2016

- Help identify and execute strategies that will advance the policy priority issues. - Participate in MS State Action Day.

- Represents the Society among stakehold-ers and decision makers. Establishes and strengthens relationships with MS Activists and public policy decision makers to best represent the interests of those affected by multiple sclerosis.

Contact Jennifer Muthig, the New York State Advocacy Director for the Society for more information. She can be reached at [email protected] or 518-499-4322.

Bill Seegull and Jessica Nofi outside National Capitol,Washington D.C, Public Policy Conference, 2016


CAN DO MSWELLNESS WEBINAR & TELELEARNING SERIES

Webinars/ Telelearnings will be held on the second Tuesday of each month from 8 - 9:15 p.m.

7/12 - Managing Symptoms: Spasticity

8/9 - Mood in MS

9/13 - Health Insurance

10/11 - Support Partners and Families

12/13 - Importance of Sleep

Please register at nationalMSsociety.org/telelearning or at 1-800-344-4867.

6WeLLness

yoga PrograMsNo prior experience necessary. Participants must be ambulatory. Please arrive 10-15 minutes prior for the class to begin on time.

WooDburyAbsolute Yoga Studio1 Guilles Lane516-682-YOGA

Tuesdays, 12:30- 1:45 p.m.Owner/Instructor, Leslie Luft

Thursdays, 11 a.m.- 12:15 p.mInstructor, Lisa Bachrach-Zeankowski*

There will be a small fee during the winter months. Please contact Absolute Yoga Studio for 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].

CLiMb To The ToP200 CLarenDon- bosTon

MarCh 5, 2016. regisTer aT CLiMbMsgne.org

New England’s tallest building- 61 stories Race for time, climb for pride, celebrate your

victory. Open to elite climbers and casual striders.Chip-timed. Fundraising prizes.

Ms ConneCTion: WinTer 2015/2016

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 Than10 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 anDunDersTanDing MsRosemarie, 516-937-9069 or 917-294-2182 Call anytime.

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 THAN10 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 ANDUNDERSTANDING MSRosemarie, 516-937-9069 or 917-294-2182 Please call between 9 a.m. - 9 p.m.


SELF-HELP GROUP

MEETINGS Please contact the peer facilitator before attending.

GARDEN CITY/ MS SUPPORT GROUP *New* Support Group for Newly Diagnosed and Relapsing Remitting MS

2nd Thursday of the month 3:30 - 4:30 p.m. This group provides a safe and confidential environment for those who are newly diagnosed with MS, or who experience Relapsing Remitting MS. This group will have occasional speakers and will provide resources and emotional support.

Lucia DiSpirito, LMSW, 516-663-4593 Neuroscience Social Worker 3rd Wednesday of the month 3:30 - 4:30 p.m. Winthrop Wellness Pavillion, 1300 Franklin Ave. Suite ML-5

DINNER MEETUPTracy, 516-668-7585 6:30 p.m. 2nd Wednesday of the month Contact facilitator for location.

GREENLAWN/REACHING FOR THAT SILVER LINING Dennis, 631-495-0512 1 - 3 p.m., 1st Wednesday of the month Harborfields Public Library 31 Broadway (small meeting room)

ISLIP/ A NEW GENERATION OF MS

Wendy, 631-236-2955 Please Call Before Attending 7 - 9 p.m., 3rd Thursday of the month Islip Public Library 71 Monell Ave This group is focused on facing the everyday concerns and challenges of maturing young adults (ranging from ages 18 to early 30’s) living with MS.

MASTIC BEACH/BALANCING YOUR CHANGES

Melissa, 516-991-3653 6 - 7 p.m., 1st Tuesday of the month St. Andrews Church- 250 Neighborhood Road Please call Melissa prior to meeting for more info.


PLAINVIEW/PHOENIX GROUPJustin, 516-857-7427 7 - 8:30 p.m. 1st Tuesday of the month Island Neurological, 824 Old Country Road

This group is focused on all people living with MS seeking a positive, supportive, and energetic environment.

SEAFORD/THE CHALLENGERS Nancy, 516-489-9163 11:30 a.m. - 2 p.m., 1st Wednesday of the month St. William the Abbot, R.C. Church- meet in the lower church abbey. Please call for details.

SMITHTOWN/FREE SPIRITS Tom, 516-220-4869 Don, 516-448-2005 1st Tuesday or Thursday the month Different restaurant each month. Call Tom or Don for date, time and location.

WANTAGH/ MS SUPPORT GROUP Donna, 516-279-8864 Teresa, 516-312-6171 11 - 1 p.m., 3rd Tuesday of the month St. Frances de Chantal School. Go to the back parking lot and enter school

We are looking to start an MS Support Group at the Sid Jacobson Y in East Hills.

This group will explores and promote medical, recreational, and other social

issues with the members.

For those interested, please contact Anthony at 516-609-9708 or Nick at 631-864-8337

option 2. [email protected]

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].


7naTionaLMssoCieTy.org | 1-800-344-4867

Once in a while, a challenge calls that you simply must answer. Challenge Walk MS is the perfect way to embrace a personal challenge of spirit and strength, while making an

important difference in the lives of people living with MS.RegisteR today & get a head staRt on fundRaising

As soon as you register, you’ll have access to our online fundraising tools that make fundraising easier and more convenient than ever! A minimum fundraising goal of $1,500 is required, but we’ll be with you every step of

the way.

3 days. 50 miles.ConneCt to end multiple sCleRosisRegisteR now: challengewalkmscapecod.org or 800.344.4867

40 Marcus DriveSuite 100Melville, NY 11747

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

New York, NYPermit No. 7131National

Multiple SclerosisSocietyLong IslandChapter

Once in a while, a challenge calls that you simply must answer. Challenge Walk MS is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the lives of people living with MS.REGISTER TODAY & BEGIN FUNDRAISINGAs soon as you register, you’ll have access to our online fundraising tools, making fundraising easier and more convenient than ever! A minimum fundraising goal of $1,500 is required, but we’ll be with you every step of the way.

Cape Cod, Mass. Sept. 5-7, 2014

CAPE COD, MASS.: SEPTEMBER 5-7, 2014

3 DAYS. 50 MILES.CONNECT TO END MULTIPLE SCLEROSISREGISTER NOW: MSchallengewalkcapecod.org or 1.800.344.4867

CAPE COD, MASS.: SEPTEMBER 5-7, 2014

saVe The DaTesyou are inViTeD

eVeryDay MaTTersEveryone has their own idea of their best life. For people living with multiple sclerosis, the idea of that “best life”

can change due to the challenges of having a chronic, unpredictable and lifelong disease. The National MS Society’s Everyday Matters, (everydayMSmatters.org) is an interactive national program which will uncover stories of real people facing the everyday challenges that MS can bring on the path to one’s best life, and puts positive psychology to work in your life. Participants will gain understanding how these principles can be used as a strategy for living with MS, as well

as identify community resources for support. Join us for an exCiTing 6 Week TeLe-ConferenCe PrograM

WeDnesDays, 6:30 - 8:00 P.M.february 24 MarCh 2, 9, 16, 23, 30

LuAnn Pierce, our teleconference facilitator is a licensed clinical social worker who has worked with the national office in different capacities since 2007. She is an instructor for several monthly classes for volunteers and individuals, couples

and family members living with MS. LuAnn also offers counseling, care management, training and groups for the CO-WY chapter. She has worked in the field of human services and mental health for three decades.

Advanced registration is required, as space is limited. (Waitlist will be accepted)To register please contact Nick Bove @ 631-864-8337, option 2 or at [email protected]

Challenge

walk

Cape Cod, mass.

septembeR 9-11, 2016

VOLUNTEER SPOTLIGHT CONTINUED..Not only does the National MS Society look for individuals to volunteer their time, we also look for volunteer groups. Groups are an important part of our volunteer community, especially at our mass markets events: Walk MS and Bike MS. When we have volunteer groups participate in our events, it depicts the support we receive from the local community which is very important to our continued success. If you are a member of a sorority or fraternity, National Honor Society, or another club/group that is interested in volunteering, please reach out to us today.

Should you have any questions or are interested in volunteering, please reach out to Kristen Rodriguez, Development Coordinator at 631-864-8337, option 2 or [email protected]. Volunteer today and help us create a world free of MS!


CLASSIFIEDS

MARKETPLACEELECTRIC COMMODEVery Good Condition2 Years OldNeeds BatteryContact Navanib at 516-305-4921

HOSPITAL BEDAir Mattress PumpExcellent Condition2 Years OldContact Richard at 516-672-1185or 516-676-7527

HOSPITAL BEDGood ConditionRises up and downContact Dennis at 646-245-2790

HOYER LIFT INVACARE RELIENT 450 LIFT Excellent Condition3 Years OldExtra Battery Contact Loma at 516-819-6993

HOYER LIFT- JOERNSVery Good Condition1 Year OldContact Navanib at 516-305-4921

MOTOMED (EXERCISE EQUIPMENT)8 Years OldGood ConditionContact Maria at 718-496-5069

STANDARD WHEELCHAIRExcellent Condition4 Years OldContact Richard at 516-672-1185or 516-676-7527

NATIONAL MULTIPLE SCLEROSIS SOCIETY MISSION

STATEMENTPeople affected by MS can live their best lives as

we stop MS in its tracks, restore what has been lost and end MS forever

1 HuntingtonQuadrangleSuite 1S06Melville, NY 11747

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

New York, NYPermit No. 7131National

Multiple SclerosisSocietyLong IslandChapter

INTERESTED IN RUNNING THE 2016 TCS NEW YORK CITY MARATHON?The premier event of the New York Road Runners, the TCS New York City Marathon is one of the world’s great road races.

Applications for the 2016 TCS New York City Marathon, to benefit the Long Island Chapter, are currently being accepted at http://eventnyh.nationalmssociety.org/site/TR?fr_id=27924&pg=entry

NOVEMEBER 6, 2016

Runners will receive: 1. Guaranteed entry into the 2016 TCS New York City Marathon 2. A personal fundraising website 3. Personalized race day running singlet 4. Race to Stop MS training dri-fit T-shirt 5. An invitation to team social events Receive the above benefits by raising a minimum of $4,000 to support of the National MS Society, Long Island Chapter.

For more information, contact Lisa Brunengraber at 631-864-8337, option 2 or [email protected].

Documents

Ms ConneCTion M s ConneCTion MS CONNECTION neW sLeTTer