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

October 2017 [donate now] [register] [contact us] [tell a friend] [visit our website] 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. 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.  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. OCTOBER SUPPORT GROUP DATES MANHATTAN, NY 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 QUEENS, NY 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 JAMES J. PETERS BRONX VA MEDICAL CENTER * 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  NASSAU COUNTY, NY 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 SUFFOLK COUNTY, NY ***LOCATION CHANGE*** 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 WESTCHESTER, NY/WHITE PLAINS 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 LOWER HUDSON VALLEY, NY 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 NORTHERN NJ/SADDLE BROOK 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 CENTRAL NJ 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 TELEPHONE SUPPORT GROUPS 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

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.

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.

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.

Advocate

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.

Volunteer

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.

Donate

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.

Tribute

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.

Connect

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.