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

August 2017 [donate now] [register] [contact us] [tell a friend] [visit our website] THE LONG ISLAND WALK: IT'S A FAMILY AND CORPORATE AFFAIR     The Long Island Walk to Defeat ALS is not only about raising awareness and funds for ALS, but it’s also about family, just ask Ralph Quartiano II. Ralph and his son Ralph Quartiano III walk for a family member who was diagnosed with ALS about 3 years ago, and have made the Walk a father-son tradition. “It obviously hits close to home because it’s in our family and watching them progress through it is really hard,” Ralph II said. Ralph and his son say they began with a modest size team. “The first year my son and I did the Walk as individuals and we reached out to family and friends and got a reasonable response and a reasonable amount of donations, but we made it a goal to double participation and contributions. You have to go to a broader network, for me it was easy to go to my employer and see if they would help with volunteerism and corporate giving,” Ralph said. Ralph said he encourages everyone to reach out to their employers and find out what options are available when it comes to volunteerism and corporate giving, because it made a huge difference when it came to fundraising. Ralph worked with his employer JPMorgan Chase to form a corporate team and the company will also match the donations.  Seeing such success within his company inspired Ralph to push his son to do the same with his personal network. “We were both coming up with ways to be decided that we would open up my Walk team to colleagues and my son would start a second team through the Saint Anthony's Hockey Club where he attends high school,” Ralph said. Ralph’s son saw similar success when approximately 5 additional families joined in their efforts through the hockey club.  “You just have to ask. People will step up and help and I am really glad I decided to get my team involved," Ralph III said. After expanding their networks and leveraging volunteerism and corporate giving, father and son managed to double their contributions last year and hope for the same this year. Ralph is proud of his teammates and how much support they offered. He says it shows that teenagers want to get involved in the community and help make a difference. This is something we see every year at the Long Island Walk to Defeat ALS, familites and communities rallying together in the fight against ALS. Meryl Reiss had middle school aged twins when she formed Team Jack's Pack for her father Jack Lieberman, who has since passed away from ALS. Meryl says her kids stepped up in ways she never expected. “The walk has really been a family affair. My kids have volunteered every year for the walk. They really have done whatever they could to help. When they were little they had lemonade stands, they would donate their babysitting money. It was just an incredible thing to see kids at their age care so much without being told.” Meryl said with her kids at college they won’t be able to physically be at the walk, but they will continue to fundraise year-round and do their part to help support the Walk. “This is the first year they will be there only in spirit, but that still hasn’t stopped them from getting on social media and fundraising, because this will always be a family affair,” Meryl said.  There is still time to sign up for one of our Fall Walks, including Long Island. Visit ALSWALKS.org to register today! AUGUST SUPPORT GROUP DATES MANHATTAN, NY Tuesday, Aug. 15th, 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: Tips for Accessing the Computer and Other Assistive Technology Hints Speakers: Ben Lieman, MSW, ATP, ALS-GNY Next month's support group meets: Sept. 19th, 2017 QUEENS, NY Wednesday, Aug. 16th, 2017 - 6:00 to 8:00 pm 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: Medicaid Eligibility Speaker: Elisha Wellerstein, Esq., Wellerstein Law Group, P.C. - Elder Care Attorney Next month's support group meets: Sept. 20th, 2017 JAMES J. PETERS BRONX VA MEDICAL CENTER * Open to veterans and non veterans *   There will be no August Support Group 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 Next month's support group meets: Sept. 13th, 2017  NASSAU COUNTY, NY Sunday, Aug. 6th, 2017 - 2:00 to 4:00 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: Raising ALS Awareness: Walks and You Next month's support group meets: There will be no Sept. Support Group due to Labor Day Holiday SUFFOLK COUNTY, NY Tuesday, August 1st, 2017 - 6:00 to 8:00 pm Stony Brook University Hospital, 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: Raising ALS Awareness: Walks and You Next month's support group meets: Sept. 5th, 2017 WESTCHESTER, NY/WHITE PLAINS Tuesday, Aug. 8th, 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: Tips for Accessing the Computer and Other Assistive Technology Hints Speaker: Ben Lieman, MSW, ATP, ALS-GNY Next month’s support group meets: Sept. 12th, 2017  LOWER HUDSON VALLEY, NY Tuesday, Aug. 1st, 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 Topics: Tips for Accessing the Computer and Other Assistive Technology Hints; Raising ALS Awareness: Walks and You Speakers: Ben Lieman, MSW, ATP, GNY; Brett Murphy, Manager of Fundraising and Special Events, ALS-GNY  Next month’s support group meets: Sept. 5th, 2017 NORTHERN NJ/SADDLE BROOK Thursday, Aug. 3rd, 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: Art Therapy for Patients and Caregivers Speaker: Erika Mayer, ATR-Bc, LCAT Next month’s support group meets: Sept. 7th, 2017 CENTRAL NJ Saturday, Aug. 19th, 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: Art Therapy for Patients and Caregivers Speaker: Erika Mayer, ATR-Bc, LCAT Next month’s support group meets: Sept. 16th, 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  TEAM ALS: FALL RACES 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 bit.ly/TeamALS2017.

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.

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.

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.

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.