Serving New York City, Long Island, Westchester County, Lower Hudson Valley, and Northern & Central New Jersey42 Broadway, Suite 1724, New York, NY 10004 • (212) 619-1400 | ALS-NY.org • Facebook.com/ALSofGNY • Twitter - @ALSofGNY

MAY 2016 SUPPORT GROUPS

TELEPHONE SUPPORT GROUPS

2016 Walk DatesNew York City - Sat., May 7, 2016

Jersey Shore - Sun., May 22, 2016

Northern NJ - Sun., June 5, 2016

Westchester, NY - Sun., June 26, 2016

Long Island - Sat., Sept. 17, 2016

Central NJ - Sun., Oct. 9, 2016

Hudson Valley, NY - Sun., Oct. 16, 2016

REGISTER NOW AT WWW.ALSWALKS.ORG!

MAY MONTHLY UPDATE

Advocacy Patient Services Research Awareness

NASSAU COUNTY, NYSunday, May 1st - 2 to 4 pmNorthwell Health* - Plainview Hospital 888 Old Country RoadPlainview, NY 11803(Downstairs)Contact: Cindy Keyser-Posner, LMSW(631) 416-2767Theresa Imperato, RN,(516) 946-5467Topic: ALS Awareness Month: Advocacy and You/ Open DiscussionNext support group meets: June 5th

LOWER HUDSON VALLEY, NY Tuesday, May 3rd - 6 to 8 pmAmbulatory Surgery CenterBuilding C3rd Floor200 Westage Business CenterFishkill, NY 12524Contacts: Helen Mayer, RN,(845) 520-0952Nancy Brenner, LCSW,(914) 406-3513Topic: ALS Awareness Month - Advocacy and You/ Open DiscussionNext support group meets: June 7th

SUFFOLK COUNTY, NYTuesday, May 5th - 6 to 8 pmStony Brook UniversityDept. of Neurology179 N. Belle Meade RoadEast Setauket, NY 11733Contacts: Cindy Keyser-Posner, LMSW, (631) 416-2767Theresa Imperato, RN,(516) 946-5467Topic: ALS Awareness Month - Advocacy and You/ Open DiscussionNext support group meets: June 2nd

WESTCHESTER, NYTuesday, May 10th - 6 to 8 pmBurke Rehabilitation Center785 Mamaroneck Avenue, Building 7White Plains, NY 10601Contacts: Helen Mayer, RN, (845) 520-0952Nancy Brenner, LCSW, (914) 406-3513Topic: ALS Awareness Month - Advocacy and You/ Open DiscussionNext support group meets: June 14th

MANHATTAN, NYTuesday, May 17th - 6 to 8 pmMt. Sinai Beth Israel HospitalPhillips Ambulatory Care Center10 Union Square East(b/w 14th & 15th Sts.)New York, NY 10003Neurology Dept., 5th Floor Conf. RoomContact: Jody Wiesel, PhD, (917) 699-9751Topic: ALS Awareness Month - Advocacy and You/ Open DiscussionNext support group meets: June 21st

NORTHERN NJThursday, May 5th - 7 to 9 pmKessler Institute for Rehabilitation300 Market Street, Saddle Brook, NJ 07663Contacts: Debbie Schlossberg, LMSW(732) 710-8832Mary Ann Mertz, RN, (908) 552-5573Topic: ALS Awareness Month - Advocacy and You/ Open DiscussionNext support group meets: June 2nd

CENTRAL NJ Saturday, May 21st- 1:30 to 3:30 pm Robert Wood Johnson Fitness & Wellness Ctr.100 Kirkpatrick StreetNew Brunswick, NJ 08901, Level 2Community Education RoomContacts: Debbie Schlossberg, LMSW,(732) 710-8832Mary Ann Mertz, RN, (908) 552-5573Topic: ALS Awareness Month - Advocacy and You/ Open DiscussionNext support group meets: June 18th

Patient group: Every Friday - 2:30 to 3:30 pm | Caregivers group: Every Friday - 4 to 5 pm Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction.A new telephone support group has been formed for patients newly diagnosed with ALS.

Contact: Sue Zimmerman, LCSW, (212) 720-3050

Greater New York Chapter42 Broadway, Suite 1724New York, NY 10004(212) 619-1400Fax: (212) 619-7409www.als-ny.org

Non Profit Org.US Postage

PAIDHicksvilleNYPermit 842

On Sunday May 8th, advocates from all over the country will descend on Washington, D.C. for three days to speak with lawmakers about the urgent issues facing patients living with Lou Gehrig's Disease during the 2016 National ALS Advocacy Day and Public Policy Conference. The goal is to inform members of Congress about legislation and to seek their support. This year, New Jersey resident Rose Joyce and Christina Raia, from Long Island, NY, will join the delegation from The ALS Association Greater New York Chapter, an annual event they’ve been participating in for over ten years.

Rose's Aunt Maggie passed away from ALS in 2003 and at the time she couldn't believe that there was no prospect for a cure available. "My aunt’s love for her sons and her dedication to always help those around her inspires me to advocate in my everyday life," she said.

Christina lost her father to ALS in 2005 after a 6-year battle. She finds it hard to believe that there is no treatment or a cure. "In the world we live in today, that is unacceptable," she said. "That's why I continue to advocate to help change the future of ALS."

Christina said that she and a few of her friends went to Washington, D.C. with the Greater New York Chapter for the first time in 2005. She's gone back almost every year since saying that finding a cure for ALS goes beyond donations. "As we’re meeting with Members of Congress, it's important to show them all aspects of the disease – not only what we need money for, but to

put a face to the disease – it’s a powerful story that not many of them may have first-hand experience with," she said.

Coincidentally, the same year that Christina started going to Advocacy Day was also the first time Rose attended. Rose goes

by herself but she's never alone. "The bond with my other advocates is unbreakable," she said. "I go to be a voice for my aunt and all the PALS everywhere that need one."

Both Rose and Christina think thatthe greatest accomplishment achieved through ALS advocacy was The National ALS Registry, a database of information submitted by PALS through a web-portal managed by the Centers for Disease Control and Prevention. The database will help researchers to determine who gets ALS and why. "Seeing the ALS Registry pass was game changing," said Rose. "What a resource for research."

Advocating doesn’t require any specific expertise – anyone can do it! "I don’t think

everyone realizes just how simple it is," said Christina. "You just need to share your ALS story – that alone makes such an impact when we’re asking for funding and support of our legislative priorities."

Christina, Rose and other Greater New York Chapter delegates will be sharing their stories on Capitol Hill this month. For more information and to find out about our legislative priorities, please contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org

ADVOCATES TELL THEIR STORIES ON CAPITOL HILL

Sign Up For The National ALS RegistryThe Federal government has taken a major step in the fight against Lou Gehrig’s Disease as the Agency for Toxic Substances and Disease Registry (ATSDR) announced the full implementation of the National ALS Registry.

People living with Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease) may self enroll in the Registry via a secure online web portal at the Centers for Disease Control and Prevention: www.cdc.gov/als.For more about the ALS Registry, contact Christine Dunn in the Chapter office at(212) 720-3044 or dunn@als-ny.org. Chris can also help you with your enrollment.

Christina Raia (back, left) and Rose Joyce (front, center) attend National ALS Advocacy Day and Public Policy Conference in Washington, D.C.