October 2016 Monthly Update | The ALS Association Greater New York Chapter

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October 2016

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

Dear Friends,

I am delighted to join The ALS Association Greater New York Chapter as your President & CEO.

I, like you, have many reasons to want to be a part of this vibrant organization. I lost my grandfather to this devastating disease. I, like many of you, have cried as I held hands with friends suffering in ways you know all too well.

But I am also filled with hope.

This is an exciting time for ALS research. New discoveries are beginning to crack the code that is ALS. I firmly believe that with adequate funding, research scientists will identify interventions that will improve quality of life – prevent onset – and once and for all find the cure.

I take the helm of an organization that has been well managed and is fiscally strong. We are blessed with a Board that is “all-in,” a smart, compassionate, and motivated staff, and an army of volunteers who are fully committed.

The ALS Association Greater New York Chapter has a proud tradition of excellence and achievement under Dorine Gordon’s steady hand. I pledge to you that under my leadership we will continue to improve lives, ease paths, and advocate for fairness and dignity. We'll redouble our relentless pursuit of the answers we MUST find. We have no time to waste.

Each one of you is critical to our ultimate success. Each one of you has an important role to play. It is my distinct privilege to join you in our quest.


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

2016 Fall Walks

Register at www.alswalks.org

Central Jersey -   Sunday, Oct. 9th
Hudson Valley, NY -   Sunday, Oct. 16th

October Events

10/1 - NJ Ragnar Trail Relay for Team ALS – Wawayanda State Park | For more information, contact Kristen Cocoman.

10/1 - Hamptons Marathon and Half-Marathon for Team ALS 9AM. Southampton, NY | For more information, contact Kristen Cocoman.

10/19 - Young Professionals Group Meeting 7PM. 42 Broadway, NYC | For more information, contact Brett Murphy.

Click here to see our full calendar of events.

October Support Groups

Sunday, Oct. 2nd, 2-4 pm
Northwell Health*- Plainview Hospital
888 Old Country Road
Plainview, NY 11803
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Carol Bishop, RN, (631) 219-0947
Topic: Tips for accessing the Computer and other Assistive Technology Benefits
Speaker: Ben Lieman, MSW, ATP
Next support group: Nov. 6th

Tuesday, Oct. 4th, 6-8 pm
Ambulatory Surgery Center
Building C, 1st Floor, Suite 130
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic: Open Discussion
Next support group: Nov. 1st

Tuesday, Oct. 4th, 6-8 pm
Stony Brook University,
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: Tips for accessing the Computer and other Assistive Technology Benefits
Speaker: Ben Lieman, MSW, ATP
Next support group: Nov. 1st

Thursday, Oct. 6th - 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 support group: TBD

Tuesday, Oct. 11th - 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: Open Discussion
Next support group: Nov. 8th

Sat., Oct. 15th - 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: Open Discussion
Next support group: Nov. 19th

Tuesday, Oct. 18th - 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 Department
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: The importance of nutrition in ALS
Speaker: Ilene Kapelner, RD (Nutritionist)
Next support group: Nov. 15th

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

Greater New York Chapter Helps Patient
Pursue His Dream of Helping Others

Eliseo “Eddie” Ilarraza with ALS Association Greater New York Chapter
Social Worker Sue Zimmerman

Eliseo “Eddie” Ilarraza has dedicated his life to helping others, working as an addiction counselor at a detox center, a career he was forced to take a step back from when he was diagnosed with ALS in 2002. He is now confined to his bed, using an eye tracking device to communicate.

“When I found out there was no cure, I was devastated. I just thought of dying. It was like I was struck by lightning, I froze, cried, and swallowed my own tears,” Eddie said.

But the thoughts of dying, in time, were replaced with determination. Eddie was going to go back to school and find a way to help others. He decided to get his Masters in Social Work from an online university.

“With all the challenges against me, a tracheostomy, and ventilator machine pumping air into my lungs 24 hours a day, I still managed to keep a 3.50 grade point average. I told myself, I am still alive, to fulfill my purpose in life and live for the benefit of helping others,” Eddie said.

“The ALS Association Greater New York Chapter and its wonderful staff are the angels beneath my wings, the ones that propel me to look forward to another day, without the help they provided I would not be here today,” Eddie said.

Click here to read the rest of this article.

FALL Walks To Defeat ALS on October 9th & October 16th

Including the Launch of the Fall Walk in Central New Jersey

The ALS Association Greater New York Chapter is launching its first annual Fall Walk to Defeat ALS in New Jersey. The Central Jersey walk is scheduled for Sunday, October 9th at the Somerset Patriots TD Bank Ball Park, in Bridgewater, New Jersey.

Matthew Ackerman – Co-captain and Founder of Team Tiger Lily’s

Joining hundreds of walkers is brand new team the Tiger Lily’s, who signed up after finding out there was a Fall walk close to home!

"This walk ended up working out great for us! This walk is close to home and the perfect time, and we were able to get other people to join our team," Tiger Lily’s Team Captain, Dan Ackerman said.

Tiger Lily's was started by 13-year-old Matthew Ackerman. Matthew wanted to form a team in honor of his Grandmother Lily, who passed away from ALS last year.

"My son Matthew had his Bar Mitzvah this year, and for his Mitzvah Project he wanted to do this Walk to raise money for ALS, because his grandmother passed away last summer from ALS," Dan said.

Team Tiger Lily’s will have 10 walkers. Dan and his family are hoping to inspire others to get involved. He hopes with enough walks, dollars, and research, in the future other families won’t have to watch loved ones suffer with this fatal disease.

"Given what we know about this disease, raising money for additional research and a cure is very important. Seeing firsthand how debilitating it is, is just heartbreaking for both the family and the patient," Dan said.

There is still time to get involved in both the Central New Jersey and Hudson Valley Walks to Defeat ALS. The Hudson Valley walk is Sunday October 16th at The Walkway over the Hudson, in Highland, New York. For more information, Click Here.

Workplace Giving: The Inside Scoop

Workplace giving programs help provide employees with a simple way to donate to charities they care about.

There are many ways employees can contribute money, including through payroll deductions, joining workplace giving federations and participating in internal fundraising events. Workplace giving not only benefits the participating charities, but also employees who become engaged in giving back.


The Combined Federal Campaign (CFC) is a workplace giving campaign for federal employees, certain civilian employees, military personnel and postal workers. State Employees can participate in the State Employees Federated Appeal (SEFA), and municipal workers have the Combined Municipal Campaign (CMC): To support The ALS Association Greater New York Chapter, use the following codes on your campaign pledge cards:

• Combined Federal Campaign: CFC code 56276
• State Employees Federated Appeal: SEFA code 99900019
• Combined Municipal Campaign: CMC code 1741


If your company’s employee giving program includes Community Health Charities or the United Way, look for ALS Association Greater New York Chapter in the listing of charities you can support. If you can’t find our listing, you can always designate the Chapter by manually writing our name on your pledge.

• Write-In Option: The ALS Association Greater NY Chapter.


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!

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.

Join our Young Professionals Group

The YPG will be holding its annual Gala on November 18th at Lavo. For more information on the event as well as to purchase tickets CLICK HERE.

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.

Every Drop Adds Up...

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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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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