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

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January 2017

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Happy New Year!

As we welcome 2017, I would like to pause to reflect upon all that has been accomplished during the past year. Importantly, please recall that much of the money raised from the 2014 Ice Bucket Challenge was used to fund Project MinE, a worldwide ALS research study. A direct result of this wise investment was the discovery this year of a new ALS gene known as NEK1. This discovery may eventually lead to a targeted treatment and ultimately a cure. Clearly this is an exciting and hopeful time for ALS research.

While investigators are on the right track, there is much more work to be done. We need your help more than ever to keep up the momentum, to grow our research programs, and to attract the brightest minds in science to join us in our quest. Our goal is to find treatments that will stop or slow the progression of the disease, prevent onset, and ultimately find the cure.

In addition to funding groundbreaking research, The ALS Association Greater New York Chapter is proud to provide care and support services to more than 760 patients and their families. We also provide more than 450 PALS with life enhancing medical equipment. However, this is not nearly enough.

Our goal is to make sure that every person living with ALS in our region who wants or needs our help knows that we are here for them. Our goal is to make certain that every PALS gets the equipment and technology assistance that he or she needs.

We are helping more people and we are funding more research thanks to your partnership, but there is still a long way to go and we rely on your continued support. Please continue to work with us and provide financial support, as together we move 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 a healthy, peaceful and joyous New Year.


Judi Brown Signature

Judith Arner Brown
President & CEO
ALS Association Greater New York Chapter

 2017 Walk Dates

New York City - Sat., May 6, 2017
Jersey Shore - Sun., May 21, 2017
North Jersey - Sun., June 4, 2017
Westchester, NY - Sun., June 25, 2017
Long Island - Sat., Sept. 16, 2017
Central Jersey - Sat., Oct. 7, 2017
Hudson Valley, NY - Sun., Oct. 15, 2017

Walking ALS-NY


January Support Group will not meet due to New Year’s Day Jan. 1st
Northwell Health - Plainview Hospital
888 Old Country Road
Plainview, NY 11803 (Downstairs)
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Carol Bishop, RN, (631) 219-0947
Next month’s support group meets:
Feb. 5th, 2017

Tuesday, January 3rd, 2017 - 6 to 8 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: Preparing for Homecare
Speaker: Mandy Blake, LMSW from Bayada Home Healthcare
Next month’s support group meets:
Feb. 7th, 2017

Tuesday, January 3rd, 2017 - 6 to 8 pm
Stony Brook University, Dept. of Neurology
179 N. Belle Mead Road
East Setauket, NY 11733
Contact: Theresa Imperato, RN
(516) 946-5467
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: New Year’s Resolutions
Next month’s support group meets:
Feb. 7th, 2017

Tuesday, January 17th, 2017 - 6 to 8 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: Preparing for Homecare
Speaker: Mandy Blake, LMSW from Bayada Home Healthcare
Next month’s support group meets:
Feb. 14th, 2017

Tuesday, January 17th, 2017 - 6 to 8 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: Research Updates from 2016 MND/ALS International Symposium in Dublin, Ireland
Speaker: Tracy Sandy-Ali, MPH, CCRC, LPN, Director of Regional Care Programs for the ALS Association Greater New York Chapter
Next month’s support group meets:
Feb. 16th, 2017

Thursday, January 5th, 2017- 7 to 9 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: Open Discussion
Next month’s support group meets:
Feb. 2nd, 2017

Saturday, January 21st, 2017-
1:30 to 3:30 pm
Robert Wood Johnson Fitness &
Wellness Center
100 Kirkpatrick Street
New Brunswick, NJ 08901, Level 2
Community Education Room
Contacts: Debbie Schlossberg, LMSW (732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: Coping Strategies
Speaker: Dale Ofei-Ayisi, MA, LCSW, Coordinator of Community Services, COPSA
Next month’s support group meets:
Feb. 18th, 2017

Please contact Michelle McKenzie, LMSW at 212-720-3045 for further info.

Advocacy Update:
President Barack Obama Signs 21st Century Cures Act

President Barack Obama signed the 21st Century Cures Act into law on December 19th. The new law will provide billions of dollars to help accelerate the discovery, development, and delivery of promising new treatments by funding research and streamlining the drug review process. Importantly, the bill also will help preserve access to complex rehab technologies (CRT) power wheelchair accessories.

The 21st Century Cures Act is groundbreaking legislation that has taken over two years of negotiations. Thank you to all of the ALS Advocates who wrote letters, made phone calls and spoke to legislators about the legislation. Because of your hard work, ALS Association priorities were included in the final legislation.

To read the full article please click here.


Happy New Year From the Young Professionals Group!

We’re excited to announce that the YPG has made its annual donation the ALS Association Greater New York Chapter’s equipment loan program!

We are very happy to increase our donation to $2,500 this year, up from $1,000 in years past. This $2,500 will be used to purchase two different types of devices. Firstly, the Loan Closet will be receiving nine head mounting laser pointers for enabling communication for patients who have lost their voice and cannot point on a letter board. The second addition to the Loan Closet will be 30 call bell devices for patients who are unable to call for assistance from their caregivers.

We hope this addition to the Chapter’s Equipment Loan Program will help patients in New York and New Jersey live with ALS. The YPG works throughout the year to raise money for programs such as the Equipment Loan Program, an Advocacy grant, and a $5,000 research grant. We’re also proud of our Walk to Defeat ALS Team which this year raised over $12,600!

We hope you all have had a wonderful holiday season and look forward to heading into 2017 by your side!

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 alsypg@gmail.com. For information about the ALS Association's Young Professionals Group, contact Brett Murphy at (212) 720-3052 or bmurphy@als-ny.org. Visit the YPG website here.


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 wolcson@aol-ny.org.

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: 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.

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 dunn@als-ny.org.

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 cocoman@als-ny.org.


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 ackley@als-ny.org.


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: dunn@als-ny.org.


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 ackley@als-ny.org. 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.


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 tribute@als-ny.org.


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 

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