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

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July 2016

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For PALS, Communication
is Key When Teaching
About Patient Needs

Social Worker Lois Lipper was recently invited to join Helen Mayer, RN, and Nancy Brenner, LCSW, Greater New York Chapter Patient Services Coordinators in conducting an in-service training for the staff of Victoria Home, a nursing home in Hudson Valley, NY. The goal was for Lois, who was diagnosed with ALS in 2012, to help those health care professionals caring for people with ALS to understand first-hand what it's like to live with Lou Gehrig's Disease.

Left to Right: Nancy Brenner; Phyllis Bianco, Executive Director of Victoria Home; Lois Lipper; Lois’ friend Ralph; and Helen Mayer.

Victoria Home nursing home is a private home-like environment built over 100 years ago. Through a grant from the New York State Department of Health, the facility was able to take on the challenge of building a special unit to provide care for people with neurodegenerative diseases such as ALS and Huntington's Disease.

Once committed, the staff was determined to learn everything they could about caring for ALS patients and contacted The ALS Association Greater New York Chapter for assistance. In-service training is a service provided to health care facilities at no cost as part of the Chapter’s patient service programs.

Victoria Home Assistant Administrator Biljana Stojadinovic, MSPT, LNHA, said it was a valuable experience to have Lois present to them. "It's one thing to talk about ALS patients but it's different to have an ALS patient in front of you telling you what it's like," she said. As a health care professional herself, Lois wanted to ensure people who care for PALS understand them physically and psychologically. "I wanted them to know the internal experience of the disease and the things that they never have thought about before," she said.

Victoria Home hopes to provide care for as many as 25 people with ALS. That comes with a different set of skills that they are developing with the help of the Greater New York Chapter through in-services on several topics including equipment, speech, swallowing, and nutrition. "They're a very devoted group who want to do their best in implementing what they have learned," said Nancy.

The biggest impact was having an ALS patient speak with them. "It gave our staff a different perspective," Biljana said. "The care level for an ALS patient is going to be different than what we are dealing with now."

Lois said one of the most important things about working with ALS patients is the value of communication. "It's not just that you can't move; it's not being able to be understood and how disconnected that makes you feel," she said. Lois is committed to education. She finds it gratifying to teach those who will care for PALS. "I think the more we reach out and are understood the more support we'll have from the community."

Would she do it again? "Absolutely," Lois said. "I think it's important. It felt good to know I was helping ALS patients to be understood in some small way."

If you would like more information about our in-service program or would like to request an in-service training, please call the Patient Services Department at (212) 619-1400.

2016 Fall Walk Dates

Register at www.alswalks.org

Long Island -   Saturday, Sept. 17th
Central Jersey -   Sunday, Oct. 9th
Hudson Valley, NY -   Sunday, Oct. 16th

July/August Events

7/20 - Young Professionals Group Meeting – 7 PM. Location TBD. For more information, email Brett Murphy.
7/21 - Volunteer Night – 6 PM. For more information, email Reagan Swaine.
7/24 - NYC Triathlon – For more information, email Kristen Cocoman.
7/27 - Long Island Walk Kick-Off – 6-8 PM. For more information, email Linda Berman.

8/1 - Somerset Patriots Golf Classic to benefit The Greater New York Chapter. Neshanic Valley, NJ. For more information, email Kristen Cocoman.

July Support Groups

No Meeting due to Holiday Weekend

Northwell Health*- Plainview Hospital
888 Old Country Road
Plainview, NY 11803
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Next support group: Aug. 7th

Tuesday, July 5th - 6 to 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: Aug. 2nd

Tuesday, July 5th - 6 to 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: Open Discussion
Next support group: Aug. 2nd

Thursday, July 7th - 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: Respiratory Support in ALS
Speaker: Julie Schnakenberg Seifert, RT
Millennium Respiratory Services NJ
Next support group: Aug. 4th

Tuesday, July 12th - 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: Aug. 9th

Tuesday, July 19th - 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: Ask the Doc &
Current ALS Research
Speaker: Matthew Harms, M.D.,
Asst. Professor of Neurology,
Columbia University Medical Center
Next support group: Aug. 16th

Sat., July 16th - 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: Ask the Doc &
Current ALS Research
Speaker: Matthew Harms, M.D.,
Asst. Professor of Neurology,
Columbia University Medical Center
Next support group: Aug. 20th

Patient group:
Every Friday - 2:30 to 3:30 pm
Caregivers group:
Every Friday - 4 to 5 pm
Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction.
A new telephone support group has been formed for patients newly diagnosed with ALS. Please call for more info.
Contact: Sue Zimmerman, LCSW, (212) 720-3050

Top 5 News Items You Need To Know This Month
From The Greater New York Chapter

Westchester Walk to Defeat ALS Co-Chairs
Present Student With Scholarship Award

Fran and Bill Monti, co-chairmen of the Westchester Walk to Defeat ALS, present a scholarship check to Zeke Rogen, a 2016 graduate of John Jay High School in Cross River, NY. “The scholarship is given to a person who expressed a desire to enter the medical profession or who has faced the challenges of a life threatening disease,” said Bill.

This is the 15th year of the scholarship in memory of the Monti’s son, William Glenn Monti, who died of ALS and was also a graduate of John Jay high school. Zeke’s father has been living with ALS for the past 10 years.

Westchester Walk Team Week Winner
Enjoys Day At The Yankee Stadium

Team Week is an exciting week of incentive prize contests before Walk Day to reward teams for fundraising success. This year, Westchester Walk to Defeat ALS team Doing It for Debby won two tickets to the Saturday, June 11th Yankee home game. Team Co-Captain Eric Berniker (right in above picture) and his father, Neil, enjoyed the game and sent us this photo of them standing in front of Lou Gehrig's "4" plaque at Yankee Stadium. Doing It for Debby raised more than $12,000 to date for the 2016 Westchester Walk to Defeat ALS. They walk in memory of Eric's mother and Neil's wife, Deborah, who passed away in 2008 from ALS.

Greater New York Chapter Retains
Charity Navigator 4-Star Rating

The ALS Association Greater New York Chapter has once again received a 4-star rating from Charity Navigator. The ALS Association Greater New York Chapter retained its 4-star rating under a new rating system with an enhanced financial methodology introduced by Charity Navigator in 2016.

We are proud to have achieved this honor as we continue our mission to support people with ALS and their families and to lead the fight to treat and cure ALS.

Sign Up For The National ALS Registry

The Federal government has taken a major step in the fight against Lou Gehrig’s Disease as the Agency for Toxic Substances and Disease Registry (ATSDR) announced the full implementation of the National ALS Registry. People living with Amyotrophic Lateral Sclerosis (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 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.

#Challenge ALS

Help Create A World Without ALS. 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.

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