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

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October 2017

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Save The Date 2017 Ask The Experts v3

Team ALS: Athletes For A Cure!

The arrival of Fall marks the completion of the 2017 outdoor event season for the Greater New York Chapter. Both the Walk to Defeat ALS program and Team ALS are wrapping up a year’s worth of meaningful and incredibly successful events. For Team ALS athletes, October also marks the home stretch after months of grueling training for the New York City Marathon, scheduled for November 5th!

The Greater New York Chapter began their endurance program, Team ALS, in 2010 with just a few entries for the New York City Marathon. While the NYC Marathon has continued to be the premier event on the Team ALS calendar, the program has since grown and today includes numerous races ranging from a Triathlon to a mud run or local 5K’s. Through these races, Team ALS athletes are able to combine their passion for physical fitness with their commitment to raising awareness and finding a cure
for ALS.

Members Team ALS with Caption

Throughout 2017 alone, Team ALS members have participated in some incredible events including the United Airlines New York City Half Marathon, the Novo Nordisk New Jersey Marathon, the Panasonic NYC Triathlon, an Ironman Challenge, the Hamptons Marathon and of course, the upcoming TCS New York City Marathon. In total, approximately 70 athletes have come together this year raising nearly $175,000 to date, with contributions continuing to add up.

For many, participating in local races with Team ALS to support our efforts to find a cure is a yearly event. Eric Bernstein is one such member with that alumni status. Eric, who’s mother, Fran Bernstein was diagnosed with ALS in 2012, runs with the Team annually. Joining for the first time back in 2014, Eric has continued to run with Team ALS in the TCS New York City

Marathon each year in honor of his mother Fran Bernstein.  Over the years, Eric has been joined by his cousins Jenny and Ali Blechman and his brother Andrew Bernstein, who collectively have raised more than $150,000 to date. Sadly, this past July, Fran Bernstein lost her battle with ALS, but Eric is committed to continuing his efforts and will run this November in his mother’s memory. 

Team Fran with Caption

To read more about Eric’s story and the many others who run, walk, swim and bike
“4 A Cure” with Team ALS, 
you can visit our fundraising page here:  https://www.crowdrise.com/ALSofGNY. Donations raised through Team ALS fund cutting-edge research, advocacy efforts, and vital support services for those living with ALS.

If you would like to join us at the TCS New York City Marathon on November 5th to cheer on the 2017 members of Team ALS, please contact Jake Carlin at (212)720-3054 or  jcarlin@als-ny.org. To register with Team ALS for one of our 2018 races, visit: www.als-ny.org.

Team ALS 2016 TCS NYC Marathon


Tuesday, October 17th, 2017-6:00 to 8:00pm 
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: Radicava Update
Speaker: Robin Krantz, MSN, RN, Clinical Educator at MT Pharma America
Next month's support group meets: Nov. 21st, 2017

Wednesday, October 18th, 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: Open Discussion
Next month's support group meets: Nov. 15th, 2017

* Open to veterans and non veterans *  
Wednesday, October 11th, 2017-1:00 to 3:00 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: Ask the Doc about Edaravone
Speaker: Noam Harel, M.D.
Next month's support group meets: Nov. 8th, 2017 

Sunday, October 1st, 2017 - 1:00 to 3:00 pm
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
Topic: Open Discussion
Next month's support group meets: Nov. 5th, 2017


Tuesday, October 3rd, 2017 - 6:00 to 8:00 pm
Stony Brook Family Medical Group
181 North Belle Mead Road, Suite 5
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: Nov. 2nd, 2017

Tuesday, October 10th, 2017-6:00 to 8:00pm
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: Radicava Update
Speaker: Robin Krantz, MSN, RN, Clinical Educator at MT Pharma America
Next month’s support group meets: Nov. 14th, 2017

Tuesday, October 3rd, 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: Open Discussion
Next month’s support group meets: Nov. 7th, 2017

Thursday, October 5th, 2017- 7:00 to 9:00pm 
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: Nov. 2nd, 2017

Saturday, October 21st, 2017- 1:30 to 3:30pm
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: Open Discussion
Next month’s support group meets: Nov. 18th, 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

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.

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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 alsypg@gmail.com. For information about the ALS Association's Young Professionals Group, contact Jake Carlin at (212) 720-3054 or jcarlin@als-ny.org. 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 wolcson@als-ny.org.

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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: 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.

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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 dunn@als-ny.org.

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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 ackley@als-ny.org.

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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: dunn@als-ny.org.

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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 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.

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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 tribute@als-ny.org.

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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