September 2017 Monthly Update | The ALS Association Greater New York Chapter

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September 2017

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Research Update Sept 2017

The ALS Association recently reported that three large research organizations — Project MinE USA, Answer ALS and the New York Genome Center (NYGC) — will be working collaboratively toward their mission for treatments and a cure for ALS. These global collaborative projects, supported by The ALS Association through ALS Ice Bucket Challenge donations, will share genome sequencing information and research expertise to move efforts forward more rapidly and efficiently.

Through this new collaboration, Answer ALS is partnering with Project MinE and the NYGC’s ALS Consortium to share their well characterized cohort of whole genomic sequencing data to further Project MinE’s international efforts in genetics. In return, Project MinE USA will contribute results from its global genetic studies to further Answer ALS’s objectives, in addition to lending its technical expertise in analyzing sequence data. This adds to the sequencing expertise already provided by the NYGC, which provides whole genome data on Answer ALS participants.

“The size and scope of each of these projects is extraordinary in ALS research,” said Dr. Lucie Bruijn, Chief Scientist for The Association. “To see them join forces will heighten each of their efforts to an unparalleled new level. It is tremendous to see such large research groups, with so many dedicated people, working collaboratively towards eliminating this disease.”

This collaboration adds to the large ALS community involved in big data sequencing efforts designed to uncover new ALS genes, which importantly leads to new therapeutic targets for researchers to go after in the fight against ALS. The more known therapeutic targets increases the likelihood that a treatment will be found.

Initiatives partnering with Answer ALS now include NeuroLINCS, The ALS Consortium at the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC), the Neuro Collaborative and Project MinE, all partially funded by The ALS Association thanks to ALS Ice Bucket Challenge funds. Through the Neuro Collaborative, The Association 

also supports Cedars-Sinai induced pluripotent stem cell (iPSC) core, which enables centralization of iPSC lines derived from people with ALS and ensures standardized research protocols. In addition, we fund NeuroBANKTM, which provides data storage infrastructure and core services to the international ALS research community, including NYGC CGND and Answer ALS.

Collaboration is the cornerstone of our TREAT ALSTM global research program. The Association understands how crucial it is to facilitate partnerships across academia, industry and other non-profit organizations to move progress forward. Data that comes out of these large, global initiatives will be shared with the entire ALS research community. In turn, duplicative efforts are minimized, while research efforts are sped up. Together, we move advancements forward!

“Both Project MinE and Answer ALS are searching to learn more about ALS in different but complementary ways,” said Dr. John Landers, Co-Director of Project MinE USA. “By combining our efforts, we minimize each of our weaknesses and enhance our strengths.”

“The added value of the New York Genome Center’s effort to provide whole genome data on our patient cohort is fantastic. The ability to collaborate with the New York Genome Center and Project MinE is wonderful and speaks to the highly collaborative nature of the scientists and clinicians that make up these tremendous efforts to understand ALS and ultimately develop effective therapies,” said Dr. Jeffrey Rothstein, the founder and Executive Director of Answer ALS.

For more information on our research programs, visit our website at

ALS Association Chapters supported the following strategic initiatives: NeuroLINCS (by the Greater Philadelphia Chapter); Project MinE (Northern New England Chapter and Ride for Life through the Greater New York Chapter); New York Genome Center (by the Greater New York Chapter and The Tow Foundation); Neuro Collaborative (Wisconsin Chapter and Orange County Chapter).

SAVE THE DATE Banbury 2017

Tuesday, September 19th, 2017 - 6:00 to 8:00 pm 
Mt. Sinai Beth Israel Hospital
Phillips Ambulatory Care Center
10 Union Square East (b/w 14th & 15th Sts.)
New York, NY 10003
Neurology Dept., 5th Floor Conf. Room
Contact: Jody Wiesel, PhD, (917) 699-9751
Topic: Proper Breathing Techniques in ALS
Speaker: Betsy Thomason, BA, RRT, Author
Next month's support group meets: Oct. 17th, 2017

Wednesday, September 20th, 2017 - 6:00 to 8:00 pm
The SilverCrest Center for Nursing and Rehabilitation
144-45 87th Avenue - 1st Floor Dining Room/Lounge
Briarwood, NY 11435
Contacts: Michelle McKenzie, LMSW (718) 644-1750
Tracy Sandy-Ali, MPH, LPN, CCRC, (631) 697-6314 
Topic: Radicava Update
Speaker: Robin Krantz, MSN, RN, Clinical Educator at MT Pharma America
Next month's support group meets: Oct. 18th, 2017

* Open to veterans and non veterans *  
Wednesday, September 13th, 2017 - 6:00 to 8:00 pm
130 West Kingsbridge Road - 1E Dayroom SCI Unit
Bronx, NY 10468
Contacts: Michelle McKenzie, LMSW (718) 644-1750
Carmen Rivas, RN (718) 584-9000 ext. 5405
April Jones, RN (718) 584-9000 ext. 5213
Topic: Open Discussion
Next month's support group meets: Oct. 11th, 2017 

There will be no September Support Group due to Labor Day Holiday
Northwell Health - Plainview Hospital  (Downstairs)
888 Old Country Road
Plainview, NY 11803
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Carol Bishop, RN, (631) 219-0947
Next month's support group meets: Oct. 1, 2017

Tuesday, September 5th, 2017 - 6:00 to 8:00 pm
Stony Brook University, Dept. of Neurology
179 N. Belle Mead Road
East Setauket, NY 11733
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Theresa Imperato, RN, (516) 946-5467
Topic: Open Discussion
Next month's support group meets: Oct. 3rd, 2017

Tuesday, September 12th, 2017 - 6:00 to 8:00 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue, Building 7
White Plains, NY 10601
Contacts: Helen Mayer, RN (845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: Art Therapy for PALS & Caregivers
Speaker: Erika Mayer, LCAT, ATR-BC
Next month’s support group meets: Oct. 10th, 2017

Tuesday, September 5th, 2017 - 6:00 to 8:00 pm
Ambulatory Surgery Center Bldg. C, 3rd Fl.
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN (845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: Art Therapy for PALS & Caregivers
Speaker: Erika Mayer, LCAT, ATR-BC
Next month’s support group meets: Oct. 3rd, 2017

Thursday, September 7th, 2017- 7:00 to 9:00 pm 
Kessler Institute for Rehabilitation
300 Market Street, Saddle Brook, NJ 07663
Contacts: Debbie Schlossberg, LMSW
(732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: Radicava Update
Speaker: Robin Krantz, MSN, RN, Clinical Educator at MT Pharma America
Next month’s support group meets: Oct. 5th, 2017

Saturday, September 16th, 2017- 1:30 to 3:30 pm
Robert Wood Johnson Fitness & Wellness Center
100 Kirkpatrick Street- Community Education Room
New Brunswick, NJ 08901, Level 2
Contacts: Debbie Schlossberg, LMSW
(732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: Radicava Update
Speaker: Robin Krantz, MSN, RN, Clinical Educator at MT Pharma America
Next month’s support group meets: Oct. 21st, 2017


Patient group: 
Every Wednesday from 2:30 to 
3:30 pm 

Caregivers group: Every Wednesday from 4:00 to 5:00pm

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

Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction



Registration is now open to join Team ALS for the TCS 2017 New York City Marathon and the Hampton's Half and Full Marathon.

To register for one of these fall races head to the Team ALS website at

Here's how you can make a difference.

Create a world without ALS by getting involved with The ALS Association Greater New York Chapter. Whether joining the Walk to Defeat ALS®, volunteering your time to support the ALS community, or sharing your story to honor our loved ones and spread awareness, there are plenty of ways to join the fight! Every action you take to Challenge ALS furthers our mission and accelerates finding a treatment and a cure for this devastating disease. For more information contact Kristen Cocoman at (212) 720-3048 or email

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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. To find out about the next general meeting of the Young Professionals Group please email For information about the ALS Association's Young Professionals Group, contact Brett Murphy at (212) 720-3052 or Visit the YPG website here.

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Matching Gifts: The Inside Scoop

Many companies allow their employees to direct their charitable giving programs through matching gifts. When an employee notifies the company that he/she has made a charitable donation, the company will make a gift of the same amount, and in some cases double the amount, to the same charitable organization. Matching Gift Programs are a wonderful way for employees to make their charitable dollars stretch farther at no cost to themselves.

If your company is eligible, request a matching gift form from your employer, and send it completed and signed with your gift. We will do the rest. The impact of your gift to The ALS Association Greater New York Chapter may be doubled or possibly tripled!

For more information, call Ruth Wolcson, Gift Coordinator, (212) 720-3041 or

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Sign up For The National ALS Registry

The National ALS Registry is an important tool researchers can use in the fight against ALS. People living with Lou Gehrig’s Disease may self enroll in the Registry via a secure online web portal at the Centers for Disease Control and Prevention:

For more about the ALS Registry, contact Christine Dunn in the Chapter office at (212) 720-3044 or Chris can also help you with your enrollment.

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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 a good book to you. Contact Christine Dunn at (212) 720- 3044 or

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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 Regina Ackley, Chief Operating Officer, at (212) 720-3047 or

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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 movie together or reading, or even helping with some household chores.

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

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Make a generous donation to find a cure, fund life saving research or to provide much needed equipment and services. To make a donation online, please click here or contact Regina Ackley, Chief Operating Officer, at (212) 720-3047 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.

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Our online Tribute Wall offers individuals and families a way to honor and remember those whose lives have been affected by ALS. Through this online collection of photos, messages, and notes we hope to share the stories of the hundreds of people in our region with Lou Gehrig's disease. If you would like to share a message and a photo, please email your submission of the name of the person and a brief paragraph of no more 200 characters along with a photograph to

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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 social media: Facebook | Twitter | ALS Blog | YouTube | LinkedIn.

Find our Walk to Defeat ALS on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help