ALS Association Greater New York Chapter

The ALS Association

September 2014 Monthly Update | The ALS Association Greater New York Chapter

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August 2014 Monthly Update from The ALS Association Banner

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Thank You!

The ALS Ice Bucket Challenge
Has Raised $100 million!

As of Tuesday, September 2nd, The ALS Association’s national office and its 38 chapters have received a combined $106 million in donations compared to $3.1 million during the same time period last year (July 29 to September 2). These donations have come from existing donors and over 2.3 million new donors to The Association. The Greater New York Chapter itself has seen a tremendous increase in donations during this same time period receiving $4.5 million versus $149,012 in 2013.

Because of the unprecedented level of awareness and financial support the ALS Ice Bucket Challenge has generated around the world, The ALS Association now has the opportunity to consider more exciting and innovative projects than ever before. We can also do even more to deliver on our existing mission-critical priorities in the areas of research, care services, and public policy.

Rest assured that people with ALS, their families, and their caregivers, are at the heart of everything we do and your commitment helps ensure that they are never alone. Whether on a global scale or in our own backyards, The ALS Association is committed to creating a world without ALS. Thanks to the Ice Bucket Challenge and people like you, we are that much closer to our goal.

We are humbled by the outpouring of confidence and support afforded to us through the Ice Bucket Challenge and we are 100% committed to responsibly stewarding every dollar donated to The ALS Association. Thank you for investing in our mission to create a world without ALS, we are so grateful to have you as a partner in our fight.

ALS Ice Bucket Challenge Links

• Donation link:

• Post your video on our Facebook page.

• And to Twitter: @ALSofGNY

Westchester Congresswoman Nita Lowey Challenges House Appropriations Colleagues to Increase Federal Investments for ALS Research

L to R: Pat Quinn, Congresswoman Nita Lowey, Daniel Braunfeld, Charlie Braunfeld, Bertha Braunfeld, Dorine Gordon, Max, Jessica Braunfeld-Turnof.

Congresswoman Nita M. Lowey (D-Westchester/Rockland), the top Democrat on the House Appropriations Committee, joined one of the co-founders of the “Ice Bucket Challenge” Patrick Quinn, ALS Association Greater New York Chapter President & CEO Dorine Gordon, and Bertha Braunfeld, of Tappan, NY, the wife and caregiver of Charlie, an ALS patient, to call attention to the need for increased awareness of Amyotrophic lateral sclerosis (ALS). Lowey said she would use her position as Ranking Member of the House Appropriations Committee to fight for increases in biomedical research funding that would help further understand the cause of and, ultimately, beat ALS.

“The entire ALS community has brought incredible attention to this horrible disease, and I will be challenging all of my colleagues on the House Appropriations Committee to increase funding for biomedical research,” said Lowey. “I’m so proud of the brave people like Pat, Bertha and her husband, Charlie, and organizations like the ALS Association of Greater NY that have done an outstanding job raising awareness of ALS. It’s time for more investments at the federal level that would significantly advance our understanding of this terrible disease, and I hope that one day we will celebrate finding a cure.”

Last year, Yonkers native Patrick Quinn was diagnosed with ALS. In an effort to raise money and awareness about the disease, he teamed up with a number of individuals, including Pete Frates, a former college baseball standout at Boston College, who was also diagnosed with ALS. Quinn was one of the founders of the Ice Bucket Challenge, which has gone viral over social media.

"The ALS Ice Bucket Challenge has been incredible,” said Quinn. “It has spread global awareness and has raised millions. I'm proud to be an intricate part of making a difference in the ALS community and am looking forward to what this momentum can bring. I'm grateful for the support and encouragement everyone has shown to ALS and patients fighting every day. I'm sincerely appreciative of Congresswoman Nita Lowey's continual support."

In less than four weeks, the ALS Association has reported that donations have increased more than twenty-five-fold compared to last year, totaling more than $88 million and generating more than 1.9 million new donors.

Dorine Gordon, President and CEO of the ALS Association Greater New York Chapter, also praised the work of Patrick Quinn, and thanked Lowey for her commitment to defeating ALS, and other diseases, through increased federal research funding.

“Over the last few weeks, we have experienced the phenomenon that is the Ice Bucket Challenge for ALS. We are thrilled with the level of awareness and dollars this challenge is generating and we also know we have a long way to go to reach our goal of finding a cure for this devastating disease,” said Gordon. “Congresswoman Lowey has been a staunch supporter of our efforts to advance the search for a cure and our Chapter’s work to assist patients and families in our community. We appreciate her taking the time to meet with us to discuss the need for additional federal funding for ALS research.”

To read the full article please click here.

September Support Groups

Tuesday, Sept. 2nd - 6 to 8 pm
Stony Brook University,
Dept. of Neurology
179 N. Belle Meade Rd.,
E. Setauket, NY
Contact: Theresa Imperato, RN,
(516) 946-5467 &
Cindy Keyser-Posner, LMSW,
(631) 416-2767
Topic: Open discussion
Next support group: Oct. 7th

Tuesday, Sept. 2nd - 6:30 to 8:30 pm
Ambulatory Surgery Ctr, Blgd C, 3rd Floor
200 Westage Business Center, Fishkill, NY
Contact: Helen Mayer, RN, (845) 520-0952
Topic: Walk to Defeat ALS
Guest speaker: Sarah Pattison, Greater New York Chapter
Next support group: Oct. 7th

Thursday, Sept. 4th - 7 to 8:30 pm
Kessler Institute for Rehabilitation
300 Market Street
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
and  Mary Ann Mertz, RN,
(732) 710-8832
Topic: Handicapped Accessible Vehicles
Guest speaker: Silio Garcia,
Fun Truck’n
Next support group: Oct. 2nd

Sunday, Sept. 7th - 2 to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Rd., Plainview - Downstairs
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
Topic: Open discussion
Next support group: Oct. 5th


Tuesday, Sept. 9th  - 6 to 8 pm
Burke Rehabilitation Center 785 Mamaroneck Avenue
Building 7 (Patient Dining Room)
White Plains, NY
Contact: Helen Mayer, RN
(845) 520-0952
Topic: Medicaid & Special needs planning
Guest speaker: Sarah Meyers, ESQ
Next support group: Oct. 14th

No meeting in September due to Long Island Walk to Defeat ALS
Robert Wood Johnson Fitness & Wellness Center
Level 2, Community Education Room
100 Kirkpatrick St.,
New Brunswick, NJ
Park in the Fitness & Wellness parking deck.
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Next support group: Oct. 18th.

Tuesday, Sept. 16th - 6 to 8 pm
Phillips Ambulatory Care Ctr.
(Mt. Sinai Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Dept.,
5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Disability & Homecare options for ALS patients &their families
Speaker: Sue Zimmerman, LCSW, Greater New York Chapter
Next support group: Oct. 21st

Patient group:
Every other Friday from 3 to 4 pm (Throughout the summer. Weekly groups will resume in the late fall.)

Caregivers group:
Currently on hiatus. Will resume in fall. If you are interested in joining this group, please contact Sue Zimmerman, LCSW at (212) 720-3050 or

For general telephone support group
information, call Sue as well.

Saturday, Sept. 20
Long Island, NY
Sunday, Oct. 19
Hudson Valley, NY

Visit to register for a Walk near you this year!

Join us for the Spring Walks in June. For more information or
to find a Walk near you, log on to WWW.ALSWALKS.ORG

Find Answers To Your
Assistive Technology Questions

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Ben might have already answered your question. To read through the many questions people have already sent to Ben, please click here.

In Need of Help?

If you are a patient, caregiver, or family member and need a little help to lighten your work load please contact us and we will request a volunteer for you. Volunteers can help in many ways - from walking your dog, shopping, or just reading aloud.

If you live in New York please contact Christine Dunn at (212) 720- 3044 or If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or

Join our Young Professionals Group

The YPG generates awareness of the fight against ALS (Lou Gehrig’s disease) by developing fun, sophisticated and meaningful opportunities for their peers to get involved in the cause.

For information about the next general meeting of the Young Professionals Group please email

For information about the ALS Association's Young Professionals Group, please click here.

Información en Español

The Greater New York Chapter website now has information on ALS and Chapter services in Spanish.  If you know someone with ALS who may need information in Spanish, please refer them to



The Greater New York Chapter continues to be on the front lines of policy debates that shape the lives of people with ALS. From healthcare to research to veterans affairs, The ALS Association Greater New York Chapter is at the table on the federal, state and local levels of government making the concerns of ALS patients and their families and caregivers known.

If you're interested in joining our advocacy efforts, please contact Kim Peters at (212) 720-3054 or


We need volunteers to help our patients and their families. Some PALS may need help with daily tasks; families and caregivers of our PALS may need help as well to lighten their work load a bit. There are so many ways to help - from watching a video together or reading, or even helping with some household chores.

If you are looking for a way to get involved please click here or learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email: for New York, or Debbie Schlossberg at (732) 710-8832 or email: for New Jersey.


Make a generous gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here. Kim Peters at (212) 720-3054 or To mail a donation, please address to: The ALS Association Greater New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004. Thank you for your generous support.


Find out instantly about the latest in ALS research, advocacy efforts, special events, and patient services. Additionally, if you or a loved one have a blog about living with ALS, please let us know.  Stay connected.

You can find our chapter on many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help 

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