Monthly UpdateAugust 2014The ALS Association Greater New York Chapter

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, NYSunday, August 3rd - 2 to 4 pmNorth Shore LIJ - Plainview Hospital888 Old Country Rd., Plainview - DownstairsContact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767Guest Speaker: Kristen Cocoman, Director of Marketing & Special Events, GNY ChapterTopic: Walk to Defeat ALS - Wear your Team shirts with Pride!Next month’s support group meets: Sept. 7th.

SUFFOLK COUNTY, NYTuesday, August 5th - 6 to 8 pmStony Brook University, Dept. of Neurology179 N. Belle Meade Rd., E. Setauket, NYContact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767Guest Speaker: Kristen Cocoman, Director of Marketing & Special Events, GNY ChapterTopic: Walk to Defeat ALS - Wear your Team shirts with Pride!Next month’s support group meets: Sept. 2nd.

HUDSON VALLEY/FISHKILL, NYTuesday, August 5th - 6:30 to 8:30 pmAmbulatory Surgery Ctr, Blgd C, 3rd Floor200 Westage Business Center, Fishkill, NYContact: Helen Mayer, RN, (845) 520-0952Guest Speaker: Indrani Dhar, Nutritionist, Putnam HospitalTopic: NutritionNext month’s support group meets: Sept. 2nd.

NORTHERN NJ/SADDLE BROOKThursday, August 7th - 7 to 8:30 pmKessler Institute for Rehabilitation300 Market StreetSaddle Brook, NJContact: Debbie Schlossberg, LMSWand Mary Ann Mertz, RN, (732) 710-8832Topic: Open discussionNext month’s support group meets: Sept. 4th.

WESTCHESTER, NY/WHITE PLAINSTuesday, August 12th - 6 to 8 pmBurke Rehabilitation Center785 Mamaroneck AvenueBuilding 7 (Patient Dining Room)White Plains, NYContact: Helen Mayer, RN(845) 520-0952Topic: Equipment Loan ProgramGuest Speaker: Ben Lieman, MSW, ATP, Assistive Technology Specialist GNY ChapterNext month’s support group meets: Sept. 10th.

CENTRAL NJ/NEW BRUNSWICKPlease note new time and location:Saturday, August 16th - 1:30 to 3:30Robert Wood Johnson Fitness & Wellness Ctr.Level 2, Community Education Room100 Kirkpatrick St., New Brunswick, NJPark in the Fitness & Wellness parking deck.(3-hour free parking; bring the parkingdeck ticket in with you.)Contact: Debbie Schlossberg, LMSW andMary Ann Mertz, RN (732) 710-8832Topic: Open discussionNext month’s support group: To be announced.

MANHATTAN, NYTuesday, August 19th - 6 to 8 pmPhillips Ambulatory Care Ctr. (Mt. Sinai Beth Israel)10 Union Square East (b/w 14th & 15th Sts.)Neurology Dept., 5th Floor Conf. RoomContact: Jody Wiesel, PhD, (917) 699-9751Topic: Open discussion – Dealing with ALSNext month’s support group meets: Sept. 16th.

TELEPHONE SUPPORT GROUPSPatient group: Every other Friday from 3 to 4 pm (Throughout the summer.)Caregivers group: Currently on a brief hiatus. If you are interested in joining this particular group, please contact Sue Zimmerman, LCSW at (212) 720-3050 or Zimmerman@als-ny.org.For general telephone support group information, call Sue as well.

AUGUST SUPPORT GROUPS

Save the Dates – 2014 Walks to Defeat ALS Long Island, NY: Saturday, Sept. 20 • Hudson Valley, NY: Sunday, Oct. 19

20th Anniversary 1994 2014• •

August 3rd - Team Emmy Lou’s 2nd Annual ALS Benefit hosted by Team Captain Julianne Martin. The event is from 3-7 PM at The New West Brook Tavern. Suggested donation of $25 at the door, raffles, food, and giveaways! Proceeds will support the Greater New York Chapter.

"ALS Awareness Night" with the Hudson Valley Renegades - For more info or to receive complimentary tickets, please contact Kristen Cocoman at cocoman@als-ny.org

Upcoming Events 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.

The CDC will be publishing the first data set from the National ALS Registry in the agency’s Morbidity and Mortality Weekly Report (MMWR) on July 25th. For more information about the ALS Registry, contact Tracy SandyAli at (212) 720-3060 or tsandyali@als-ny.org.

National ALS Registry

Are you planning an event in your community to raise funds and awareness for ALS in 2014? Whether it’s a bake sale, a poker night, or a happy hour, you can organize an event in your community that suits you. For ideas on how to raise funds and awareness for research and patient services contact Ally Davis at adavis@als-ny.org.

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

Eighteen current and former Milton Safenowitz Post-Doctoral Fellows came together recently to discuss their research, form new connections, and further the cause of finding new treatments for ALS. The meeting, held in New York City and hosted by the Greater New York Chapter of The ALS Association, was designed to strengthen the network of young ALS researchers, according to Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A.

“Our ability to make progress in ALS depends so much on attracting the best young scientists into the field,” Dr. Bruijn said. “The Milton Safenowitz Post-Doctoral Fellowship is a critical part of that effort. Almost 90 percent of the Fellows stay in ALS research,” and former Fellows make up a significant fraction of the younger generation of ALS researchers.

The prestigious fellowships are offered every year to selected candidates and provide two years of funding for post-doctoral work in the laboratories of senior scientists. The fellowships are

funded through the generosity of the Safenowitz family through the Greater New York Chapter and are in memory of Mr. Safenowitz, who died of ALS in 1998.

“We are very grateful for the leadership and generosity of our Board Member, Marilyn Safenowitz, and proud of the role our chapter has played in helping to establish the first ever Fellowship program for ALS research,” said Dorine Gordon, President & CEO of The Association’s Greater New York Chapter.

During the awards presentation luncheon, which took place midway through the day-long meeting, Alan Levine, Mr. Safenowitz’s son-in-law and Board Member of the Greater New York Chapter, spoke movingly about the commitment of the family to ALS research and their appreciation for the work of the Fellows and The ALS Association in driving that research.

The luncheon keynote speaker was Bryan Traynor, M.D., Ph.D., of the National Institute on Aging, who described the work of multiple international teams in the discovery of the C9orf72 gene, the most common genetic cause of ALS. Dr. Traynor had the rapt attention of the group of scientists as he described the false starts, the unexpected clues, and the ultimate unraveling of the mystery of the gene.

But the major part of the meeting belonged to the Fellows, several of whom commented on the unique value of the meeting for making connections among other beginning ALS researchers. In the words of one, “It was a terrific opportunity to talk at such length with my peers, to meet everyone, to learn about their work, and consider new collaborations.” These kinds of connections go far to further the cooperative spirit that guides ALS research worldwide.

For more information on The ALS Association’s Research Programs, contact Kim Peters at (212) 720-2054 or kpeters@als-ny.org.

Safenowitz Fellows Present Research at New York Meeting

FIRST CLASS MAILPRESORTEDUS POSTAGE

PAIDHICKSVILLE NYPERMIT NO. 842

Current and former Milton Safenowitz Post-Doctoral Fellowship recipients, along with members of the Safenowitz family and ALS Association Greater New York Chapter and National Office.