MS CONNECTION NEWSLETTER · WABC-TV’s Eyewitness News. Once in a while, a challenge calls that...

SPRING 2015 LONG ISLAND CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

02CALENDAR OF EVENTS

05MS AWARENESS NIGHT

08KIDS DO GET MS

04NYC MARATHON

MAKE EVERY CONNECTION COUNTMS AWARENESS WEEK

BEGINS MARCH 2

2 MS CONNECTION: SPRING 2015

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

For more information on Progams and Services, contact Jane Reilly at [email protected] or Marissa Baum at [email protected]

For information on Special Events, please contact Natale Raimo at [email protected] or Elisa Ruoff at [email protected]

© 2015 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

CALENDAR OF EVENTS

Walk MS: Belmont Lake State ParkMay 3

Walk MS: Jones Beach, Field 5May 16

Spring into Awareness LuncheonMay 20

Bike MS: Traffic Free RideJune 7

Muckfest MS- New JerseyJune 13

Bike MS: East End RideSeptember 12

Challenge Walk MS- Cape CodSeptember 11-13

For more information and to register, please visit www.nmssli.org

or call 631-864-8337, option 2.

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

SAVE THE DATE

WEDNESDAY, MAY 20 AT CARLYLE ON THE GREEN

In its tenth consecutive year, the Spring into Awareness Luncheon will revisit its roots and cel-ebrate real people with real stories. We will be honoring those living with MS and inviting them to participate in an exciting fashion show. The afternoon promises to be an inspiring look at amaz-ing individuals whose lives are affected by this often disabling disease. We are honored to tell their stories as they move forward on the runway and in life.

Special Guest Emcee: Kristin ThorneKristinThorne is a Long Island correspondent for

WABC-TV’s Eyewitness News.

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 FUNDRAISING

As 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.

3 DAYS. 50 MILES. CONNECT TO ENDMULTIPLE SCLEROSIS

REGISTER NOW! MSchallengewalkcapecod.org 1.800.344.4867

CAPE COD, MASS. SEPTEMBER 11-13, 2015


PAST EVENT

NYC MARATHONOn Sunday, November 2, 2014, four amaz-ing people participated in the New York City Marathon on behalf of the National MS Soci-ety, Long Island Chapter. Together, they raised over $30,000 to help end MS.

One of the runners, Bob Gaeta, ran four mar-athons when he turned 50 last year. “What a marathon it was. With friends and family on the course to cheer me on, it made for a real special run. Then, something happened at the 59th street bridge. While running, I felt a tap on my back and a young man said “THANK YOU”. At this time I am just thinking of me, my body, my running, my breathing and my pace. I didn’t realize why he was thank-ing me. “My brother was diagnosed with MS this week.” he said. Without even thinking I replied “We are here for your bro”. I then real-ized why I was running.” – Bob Gaeta, TCS Marathon Runner and National MS Society Fundraiser.

Thank you Lane Seidman.

Bob Gaeta with his daughter.

The New York City Marathon has grown from a Central Park race with 55 finishers to the world’s largest and most popular marathon, with 50,530 finishers in 2014.

The Long Island Chapter has spots open for the 2015 NYC Marathon on Sunday, Novem-ber 1. If you want to be part of this inspiring day, please contact Elisa Ruoff at [email protected] for more information.


MONDAY, MARCH 2, 5-8 P.M. AT CARLYLE ON THE GREENBETHPAGE STATE PARK

99 QUAKER MEETING HOUSE ROAD FARMINGDALE, NY

MS AWARENESS NIGHT

Registration and Exhibitor Area Open

5 - 8 p.m.

Main Event

6:30 - 7 p.m.

“Stem Cell Research Presentation” by Ilir Topalli, Ph. D.

BREAKOUT SESSIONS7:15 - 8 p.m.

Dessert, coffee and tea will be served in each breakout room. Please choose one session to attend

A) How we do it: 3T MRI Imaging of Multiple Sclerosis presented by Matthew Young, D.O. Specialty in Neuroradiology at Zwanger-Pesiri Radiology

B) Newly Diagnosed Orientation - Pat Melville, RN, MSN, NP-C, MSCN, PMSC, Partners in MS Care, CCC at Stony Brook University

C) Complementary and Alternative Therapies - Karen Blitz-Shabbir, DO, North Shore-LIJ Health System, MS Care Center and David Steiner, MD, Five Towns Neurology & Physical Medicine

D) Smart Device “Applications for MS” - Edward J. Barnoski, Ph.D., ABPP/ABCN, PMSC, Partners in MS Care, Neuropsychological Associates, LLC and Gail Warrack, NMSSLI Board Member, LI Coordinator of Volunteer Services at FEGS Health & Human Services

Light appetizers will be served during the main event only. Event ends at 8 p.m. promptly. Please make necessary transportation arrangements.

REGISTRATION IS REQUIRED. PLEASE REGISTER BY FEBRUARY 26. CALL 1-800-344-4867, OPTION 1. WHEN REGISTERING, PLEASE CHOOSE WHICH BREAKOUT SESSION YOU WILL ATTEND

(A, B, C, D)


PROGRAMS

COUNSELING SERIESADULT FAMILY MEMBERS Melville, Long Island Chapter OfficeMichael Greenberg, ACSWThursdays, 7 - 8:30 p.m. April 9-May 28

ADULT FAMILY MEMBERS Carle Place, 1 Old Country Road, Suite 295Vicki Kulberg, ACSWSaturdays, 12 - 1:30 p.m.April 11 - June 27

BUT YOU LOOK SO GOODSyosset Hospital, Doctors LoungeMichael Greenberg, ACSWSaturdays, 10-11:30 a.m.April 11 - May 30 LIVING WITH MSMather Memorial HospitalConference Rm. #3- front of hospitalKaren Tuminello, MSWThursdays, 7 - 8:30 p.m.April 16 - June 11

Lake Ronkonkoma Senior CenterKaren Tuminello, MSWWednesdays, 7 - 8:30 p.m.April 22 - June 10

HOME BOUND CONFERENCE CALLKaren Tuminello, MSWThursdays, 1 - 2 p.m.April 23 - May 28 MOMS WITH MS CONFERENCE CALLKaren Tuminello, MSWTuesdays, 1 - 2 p.m.April 21 - May 26

EAST END SUPPORT CONFERENCE CALLKaren Tuminello, MSWMondays, 7 - 8 p.m.April 20 - June 15

MEDITATE YOUR WAY TO BETTER HEALTH Melville, Long Island Chapter OfficeRuth GellerTuesdays, 7 - 8 p.m. On-going

Southside Hospital- Chapel (NEW)301 W. Main Street, Bayshore Thursdays, 11 a.m.- 12 p.m.March 5, 12, 26; April 9, 23: May 7, 21, 28; June 11, 25 To register for these programs, please contact Marissa Baum at 631-864-8337, option 2 or [email protected].


Proud to be the title sponsor of Walk MS!

Ultra high-field 3T MRI is superb for detecting plaques in the brain and spinal cord, which

helps in the treatment for multiple sclerosis patients.

Bringing the latest 3T MRI technology to Long Island


ADVOCACY

KIDS DO GET MS BY PATTY TAYLOR

Last year, my husband and I went to Capitol Hill in Washington, D.C., for the National Multiple Sclerosis Society’s Congressional Briefing on Pediatric MS. We spoke with more than 30 congressional members and staff who had gathered together to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean.

Sean’s symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – doctors performed a battery of tests and a diagnosis of acute disseminated encephalomyelitis (ADEM) was made. I remember reading about ADEM and seeing a mention of MS, but I didn’t think twice about it since we had heard that “kids don’t get MS.”

DIAGNOSIS CONFIRMEDAfter that experience, Sean was symptom-free for three years until we once again found ourselves at the hospital where an MRI

showed lesions on his brain consistent with MS. A spinal tap confirmed the diagnosis. We were devastated. As a neonatal intensive care nurse, I knew very little about MS. Thankfully, and we were able to meet our neurologist, Dr. Amy Waldman at the Children’s Hospital of Philadelphia.

Unsure how long Sean’s relapse might last, we began to consider what therapies were available. Since the Food & Drug Administration (FDA) has not approved any of the disease-modifying therapies for MS for use with children, neurologists use them off-label. In addition, the four medications approved at the time for adults with MS were all injectable–not exactly kid-friendly.

PATTY TAYLOR AND HER SON, SEAN


PEDIATRIC MS IS COMING TO LIGHT, WHETHER AT MS RESEARCH CONFERENCES, IN THE HALLS OF CONGRESS, OR AT BIKE MS EVENTS.

Once we chose a therapy, it was very difficultto tell Sean that he would be given a shot every week. We decided to do something special on injection day, like watch a movie or make Sean’s favorite dinner. He was always such a champ; he never complained. I gave the injections to him until his senior year in high school when he began using a self-injector to prepare for college. Sean’s proud that he has only missed one week of medication over the last nine years. I think in his mind, as long as he takes his medicine, he will not have an exacerbation and end up back in the hospital. So far so good—we hope that continues to be true for Sean.

COMING TO LIGHTFrom the start of Sean’s diagnosis we began to attend National MS Society events. We were anxious to meet other parents and kids who truly understood our situation. We needed to know that we were not alone. We heard one thing over and over from parents: “My doctor said that kids don’t get MS.” My hope is to squash that myth so that more money, more grants and more pediatric centers for MS can exist across the country.

Sean is a true success story and we could not be prouder of him. He has not been hospitalized since he started his disease-modifying therapy and his MRIs have been stable over the last five years. He does well in school, is an avid runner, and just started his sophomore year of college with a focus on finance and accounting. We’ve been involved in the MS City to Shore Bike MS event since his diagnosis and have raised $80,000 to date. We will ride until a cure is found – we just completed our ninth ride with Team Taylor. Sean even designed our team jerseys!

Pediatric MS is coming to light, whether at MS research conferences, in the halls of Congress, or at Bike MS events. Contact your members of Congress to urge support for MS research funding—including pediatric MS! For more information on becoming an MS activist, visit www.nationalMSsociety.org/advocacy.

Patty Taylor’s son, Sean, was officially diagnosed with pediatric MS in 2010. The MS movement has become a family affair for the New Jersey family, who volunteer for the Society in many ways.

Originally published on www.MSconnection.org/blog.

Learn more about pediatric MS atwww.nationalMSsociety.org/pediatricMS.


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.

RECREATION AND SOCIALIZATIONBay ShoreSouthside Hospital- Chapel 301 W. Main Street Carol MacBride, CTRSThursdays, 12-3 p.m.February 5, 12; March 5, 12, 26; April 9, 23; May 7, 21, 28; June 11, 25

FreeportFreeport Recreation Center130 East Merrick RoadTeresa Sawicki, CTRSSaturdays, 12 - 3 p.m.In progress: March 7, 21; April 11, 18; May 2, 16

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, MARCH 10 Staying Vertical: Reduce Risks for FallsPresented by Can Do MS Programs Consultants: Ann Mullinix, OTR/L and Kathy SanMartino, PT, NCS, MSCS, ATP/SMS, CLT

Living with MS can increase your chances of falling and becoming injured. This webinar will help you eliminated fall hazards in your home and make it easier to get around safely. Join Physical Therapist, Kathy SanMartino, and Occupational Therapist, Ann Mullinix, as they discuss risk factors that can contribute to falling and provide ways to improve your safety at home and in the community.

WEBINAR DETAILS:

• Tuesday, March 10• 8 - 9:15 p.m. ESTVisit 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

TELELEARNING The National MS Society telelearning pro-gram for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. each free telelearning features topic-area expert(s) by phone with online presentations and Q&A session.

Managing MS Bowel & Bladder SymptomsMarch 17 & 19, 2015

Sex Ed for Grownups – Intimacy in MSMay 19 & 21, 2015

Gender Differences in MSJuly 21 & 23, 2015

Preparing for MS Doctor VisitsSeptember 15 & 17, 2015

Learn more and reserve your spot at nation-alMSsociety.org/telelearning or call 1-800-344-4867

ADVERTISEMENT


PROGRAMS

WELLNESSAQUATICS – 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.Wednesdays, 10:05 – 11:05 a.m.

YOGA Connetquot Public Library760 Ocean Avenue, Bohemia631-567-5079Instructor, Karen ScherTuesdays, 11 a.m. - noon*Please check the website for session information: www.connetquotlibrary.org or contact the instructor at [email protected]

East Meadow Jewish Center1400 Prospect Avenue, East Meadow516-483-4205 Instructor, Shelley Sidelman 516-802-3876Wednesday noon - 1 p.m.April 1 - June 10

Millennium Diner156 East Main Street, Smithtown631-724-5556Instructor, Shelley Sidelman 516-802-3876Friday 10 - 11 a.m.April 3 - June 12

PHYSICAL THERAPY- SMITHTOWN Progressive Therapy- Greenlawn266 East Pulaski Road, Suite 3Therapist, Mike Rosati, PT- 631-673-4600Tuesdays, 1-2 p.mMarch 10 - April 28

St. Charles Rehab Network 240 Middle Country Road, Suite 208Brian Quinn, PTA- 631-382-4550Wednesdays, 1 - 2 p.m.April 15 - May 20

TENNIS- OCEANSIDEPointset Tennis3065 New Street516-536-2323Instructor, Tonny Van de PietermanTuesdays - ongoing, please call for session time

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].


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 Lane516-682-YOGA

Tuesdays, 12:30 – 1:45 p.m.April 14 - June 2Owner/Instructor, Leslie Luft

Thursdays, 11 a.m. – 12:15 p.m.April 16 - June 4Instructor, Lisa Bachrach-Zeankowski*

Absolute Yoga Studio will be continuing its yoga programs for individuals with MS dur-ing the summer months. There is a nominal fee for the summer 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].

KINGS PARKSimplicity Yoga Studio 84 Main Street 631-546-8894

Tuesdays, 12:30 – 1:30 p.m.April 14 - June 2Owner/Instructor, Rosanne Sihler

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.March 20 - May 22

SUFFOLK LOCATION3140 Veterans Highway, BohemiaMondays, 10:45 a.m. - noonMarch 23 - May 25

There is a $50 member fee for this 10-week cost-sharing program. Advance registration is required. To register, please contact Marissa Baum at 631-864-8337, Option 2 or [email protected]


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. 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 30’s) 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 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

MARKETPLACEFREE HOSPITAL BED Has posturepedic mattressRemote controlExcellent condition1 year oldContact Sheryl at 914-953-1812

FREE HOSPITAL BEDNot automated Excellent condition1 year oldContact Sheryl at 914-953-1812

FREE RIGHT SIDE CHAIR LIFTSComes in 2 separate sections: covers 7 steps, 5 stepsRemotes includedExcellent condition2 years old, gently usedContact Sheryl at 914-953-1812

FREE QUANTUM 6-WHEEL ELECTRIC WHEELCHAIR 6 years oldGood condition Has batteryContact Melinda at 917-870-2408

For more listings, please visit nmssli.org

40 Marcus DriveSuite 100Melville, NY 11747

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

New York, NYPermit No. 7131National

Multiple SclerosisSocietyLong IslandChapter

SOCIAL SECURITY DISABILITY

Accidentsu

Disabilityu

Lectured at MS conferences and support groups; active on Long Island

Chapter’s MS Committeesu

30 YEARS EXPERIENCEu

OFFICES200 Broadhollow Road, Melville, NY

225 Broadway, New York, NY

FREE CONSULTATIONLAW OFFICES OF GARY GLENN

(212) 732-5250(631) 423-0182

MS CONNECTION NEWSLETTER · WABC-TV’s Eyewitness News. Once in a while, a challenge calls that...

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