MonthlyUpdateJanuary 2015

Serving New York City, Long Island, Westchester County, Hudson Valley, and Northern & Central New Jersey42 Broadway, Suite 1724, New York, NY 10004 • (212) 619-1400

www.ALS-NY.org • Facebook.com/ALSofGNY • Twitter - @ALSofGNY

NASSAU COUNTY, NYMeeting for January is cancelledNext month’s support group meets: February 1st.

SUFFOLK COUNTY, NYTuesday, January 6th - 6 to 8 pmStony Brook University, Dept. of Neurology179 N. Belle Meade Rd., East Setauket, NYContact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767Topic: New Year’s ResolutionsNext month’s support group meets: February 3rd.

HUDSON VALLEY/FISHKILL, NYTuesday, January 6th - 6:30 to 8:30 pmAmbulatory Surgery CenterBuilding C, 3rd Floor200 Westage Business Center, Fishkill, NYContact: Helen Mayer, RN, (845) 520-0952Topic: Open DiscussionNext month’s support group meets: February 3rd.

NORTHERN NJ/SADDLE BROOKThursday, January 8th - 7 to 8:30 pmDate change for this month.Kessler Institute for Rehabilitation300 Market StreetSaddle Brook, NJContact: Debbie Schlossberg, LMSWand Mary Ann Mertz, RN, (732) 710-8832Guest Speaker: Ben Lieman, ATP, the ALS Association, Greater NY ChapterTopic: Assistive TechnologyNext month’s support group meets: February 5th.

WESTCHESTER, NY/WHITE PLAINSTuesday, January 13th - 6 to 8 pmBurke Rehabilitation Center785 Mamaroneck Avenue, Building 7(Patient Dining Room)White Plains, NYContact: Helen Mayer, RN, (845) 520-0952Topic: Open DiscussionNext month’s support group meets: February 10th.

MANHATTAN, NYTuesday, January 20th - 6 to 8 pmPhillips Ambulatory Care Center(Mt. Sinai Beth Israel)10 Union Square East(b/w 14th & 15th Sts.)Neurology Department5th Floor Conference RoomContact: Jody Wiesel, PhD, (917) 699-9751Guest Speaker: Jeffrey Abrandt,Elder-care attorneyNext month’s support group meets: February 17th.

CENTRAL NJ/NEW BRUNSWICKSaturday, January 17th - 1:30 to 3:30 pmRobert Wood JohnsonFitness & Wellness Center.Level 2Community Education Room100 Kirkpatrick StreetNew Brunswick, NJPark in the Fitness & Wellness parking deck.Contact: Debbie Schlossberg, LMSW andMary Ann Mertz, RN (732) 710-8832Guest Speaker: Ben Lieman, ATP,ALS Association, Greater New York ChapterTopic: Assistive TechnologyNext month’s support group meets: February 21st.

TELEPHONE SUPPORT GROUPSPatient group – Meets weekly every Friday from 2:30 PM to 3:30 PM –

alternates between a “talk” group and “mindfulness basedstress reduction exercises” (meditation & guided imagery).

Caregivers group – Every Friday from 4 PM to 5 PM.If you are interested in either group please call Sue Zimmerman, LCSW at (212) 720-3050.

JANUARY SUPPORT GROUPS

The 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 or contact Christine Dunn in the Chapter office at (212) 720-3044 or dunn@als-ny.org. Chris can help you with your enrollment.

For more about the ALS Registry, contact Tracy Sandy-Ali at (212) 720-3060 or tsandyali@als-ny.org.

National ALS RegistryRegistration for the 2015 Walk to Defeat ALS opens February 1st!

www.ALSWALKS.org

SAVE THE DATE!

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

Dear Greater New York Chapter Supporter,

The New Year is upon us once again and we have great hope to continue the momentum and advance our cause in 2015.

Looking back, 2014 was quite a year for The ALS Association and the Greater New York Chapter. No one could have ever predicted the tremendous success for ALS awareness that would wash over the nation in the form of the ALS Ice Bucket Challenge.

Viral videos took over social media and contributed to unprecedented awareness for Lou Gehrig’s Disease as celebrities, politicians, friends, family and PALS all joined in to help keep the challenge going. Because of this grassroots campaign inspired by the Senerchia, Quinn, and Frates families we reached significant milestones by raising more than $100 million nationally to fund our key mission priorities of Research, Patient Services, and Advocacy. While the amount of money raised is truly remarkable, we also value the visibility and public awareness that ALS is receiving. We have never been in a better position to fuel our fight against this disease.

Our seven Walks to Defeat ALS across the Greater New York region raised over $2.5 million this year with over 16,000 people, 140 PALS and more than 900 family teams, including 175 new teams at our two fall Walks.

Our Chapter’s delegation of advocates from New York and New Jersey travelled to Washington, DC in May for National ALS Advocacy Day and reached out to our local members of Congress to continue the urgent fight to develop effective treatments for ALS.

In November, we celebrated a milestone occasion in our history, the 20th Annual Lou Gehrig Sports Awards Benefit, honoring sports legends Don Mattingly, Franco Harris, and Keith Hernandez. Derek Jeter presented awards to ALS Ice Bucket Challenge co-founders Pat Quinn and Anthony Senerchia. Our Jacob K. Javits Lifetime Achievement Award was presented to BNY Mellon. Along with a live auction hosted by former New York Giants Howard Cross and a silent auction, the event raised over $1.1 million for patient care services and research.

The Greater New York Chapter recognizes the importance of this year’s events, such as the ALS Ice Bucket Challenge, our local Walks to Defeat ALS, the Lou Gehrig Sports Awards Benefit and

our commemoration at Yankee Stadium of the 75th Anniversary of Lou Gehrig’s famous farewell speech, to allow our chapter to sustain patient care services and invest in research.

We are proud to be the recognized leader in ALS patient care. Our chapter provides an unparalleled array of services to more than 775 people living with ALS and their families in our four areas of operation – New York City, Long Island, Westchester County/Hudson Valley, and Northern and Central New Jersey. We offer state of the art clinical treatment through our ALS Association Certified Centers of Excellence – Mt. Sinai Beth Israel Medical Center, Rutgers Robert Wood Johnson Medical School, and Stony Brook University Hospital, as well as our ALS Association Program at the Hospital for Special Surgery, now in its third year of operation.

Because of your generous support we have been able to accomplish so much this year:

• 775 patients and their families received services and support.• 458 PALS received care at our ALS Association sponsored treatment centers.• Over 200 patients received 683 pieces of equipment from one of our three loan closets.• 735 home visits were made to our PALS and their families by our nurses, social workers, and assistive technology specialist.

We are helping more people and we are funding more research thanks to you. While there is still no cure for Lou Gehrig’s disease, we are witnessing advances that move us closer to our vision of a world without ALS.

On behalf of the Board and Staff of The ALS Association Greater New York Chapter, I wish you Happy Holidays and a peaceful New Year.

Sincerely,

Non Profit Org.US Postage

PAIDHicksvilleNYPermit 842

Dorine Gordon