ALS Association Greater New York Chapter

The ALS Association

June 2013 Monthly Update | The ALS Association Greater New York Chapter  

ALS Banner - Fighting on every front to improve living with ALS.

June 2013

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Walk to Defeat ALS

NEW ALS Support Group:
Westchester County, NY

The ALS Association Greater New York Chapter is proud to announce its newest monthly support group - in Westchester County. With the addition of this group, the Chapter now holds seven support groups each month throughout New York and New Jersey. Our support groups allow patients, caregivers and other loved ones to share their thoughts and feelings in a safe and confidential environment with other people impacted by ALS. Each month we enlist experts in various disciplines and allow for frank, open discussion, which can provide emotional and practical support.

Our first Westchester support group will meet on Tuesday, June 11th from 6:00pm-8:00pm at the Burke Rehabilitation Center located at 785 Mamaroneck Avenue; Main Hospital, Building 7, First Floor, Conference Room G-41 in White Plains, New York. We will continue to meet at this time and place on the second Tuesday of each month. For more information, call Patient Services Coordinator Helen Mayer, RN at (845) 520-0952.

We look forward to seeing you on June 11th in Westchester or at one of our other 6 monthly groups!

Calender of Events

6/9 - Saddle Brook, NJ Walk to Defeat ALS

6/11 - New Support Group- White Plains, NY in Westchester County.

6/15 - Bridgewater, NJ Walk to Defeat ALS

6/23 - Westchester Walk to Defeat ALS (Purchase, NY)

6/26 - Young Professionals Group- Monthly meeting (time & place TBD). For info contact Loren Domilici at or (212) 720-3060.

7/19 - ALS Awareness Day with Minor League Baseball's Brooklyn Cyclones- Join us in Coney Island for the Annual ALS Awareness Day. For details contact Kristen Cocoman at or (212) 720-3048.

Father's Day

Strong As You

I've been asked to write an article about my father. At first I thought, well this is will be nice, then immediately I thought wait, "How do I write this the correct way?" I do not want this to focus around ALS. Let me begin to tell you why.

This condition may in fact make it harder for people to walk, talk, breath, etc; but to me that does not make you weak. My father is one of the strongest people I know, even more so after being diagnosed with ALS. He has lost, I would say, eighty percent of his movement in his legs and is starting to lose the ability to do delicate tasks with his hands. Also like everyone else with this condition he gets upset from time to time and has to have a good cry. Again, none of this is a sign of weakness, because at no point does he stop.

Every day he gets up and continues to go to work to keep the doors of the business he started open and to continue to put food on the table for his two children and his wife of twenty-eight years. He keeps his attitude positive not only for himself, but for his family and all his friends around him. He keeps their spirits high; we all know this condition takes a toll on all loved ones. He is willing to carry everyone’s happiness on his shoulders. Even after pushing through an exhausting nine hour work day, he will go to two ALS Association support groups a month. If asked why? He responds with, "I want to go and make sure I keep everyone at those meetings upbeat."

Does that sound like the attitude of someone who was told "You have ALS?" If it does then you must be blessed to have someone as special as my father in your life. His goal is to continue being the man he was before his diagnosis and to help others who think it's not possible. I have seen even more strength come through my father during this long journey that he is going through, it maybe not always physically but emotionally for sure. I hope to one day be as strong as you Dad, I love you.

by Michael A. Najda, 25 -- Clifton, NJ

June Support Groups

Sunday, June 2nd
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN, 
(516) 946-5467
and Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Respiratory Issues in ALS patients - new procedure: Diaphragm Pacing System.
Guest Speaker: Dana A. Telem, MD

Tuesday, June 4th
6 pm to 8 pm
Stony Brook University
Dept. of Neurology 
179 North Belle Meade Rd,
East Setauket
Contact: Theresa Imperato, RN,
(516) 946-5467
Topic: Respiratory Issues in ALS patients - new procedure: Diaphragm Pacing System.
Guest Speaker: Dana A. Telem, MD

Tuesday, June 4th
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg C, 3rd floor
200 Westage Business Center
Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Coping Skills & Open Discussion
Speaker: Jody Wiesel, PhD

Thursday, June 6th
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ 
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,

(732) 710-8832
Topic: Respiratory Issues/Care for ALS patients
Guest Speaker: Dr. Philip Schiffman

Tuesday, June 11
6 pm to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7,
1st Floor Conference Room G-41,
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Open Discussion & Introductions

June 18th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open Discussion, “Coping with ALS”

Special support group for newly diagnosed patients only and their families.
Saturday, June 29th
1pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg, Room 108A
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832

For caregivers and patients.
Summer schedule: will be held on a bi-weekly basis:
5/31, 6/14, 6/28, 7/26,
8/9, 8/23, 9/6, 9/20
Contact: Sue Zimmerman at
(212) 720-3050

Summer Giving

Summer is fast approaching and we're looking forward to fun times in the sun and surf! Your donation during this cheerful time can help our Chapter provide area PALS with needed equipment to ensure they can experience summer fun as well - beach wheelchairs to enjoy a day on the sand and motorized wheelchairs for long excursions outside. Please support the Equipment Loan program to help improve lives by making a donation today to help us continue improving the quality of life for our PALS. For more information, please contact Loren Domilici at (212) 720-3060 or

ask ben logo.jpg

I live in an apartment with a lot of doorways. However each doorway has a bump-like divider on the floor that’s a hard to get over with my wheelchair. Is there anything that can help me get over this bump with my wheelchair?

- Barbara - Manhattan, NY

Yes Barbara, there is. These bump dividers are referred to as door saddles and are used for two primary reasons 1) to reduce air flow, and 2) to create a transition, from one room to another. When an interior doorway transition is cosmetic, you can have the saddle removed. The door will simply sit a little higher off the floor, allowing more sound and air to flow between rooms. The unfinished floor beneath the saddle can simply be covered with a strip of metal or wood, which then rises only minimally. This will create a smaller 'bump', but at 1/4" thick or less, should only minimally impact the movement of a wheelchair.

When a doorway saddle straddles two separate floor heights (i,e. into a bathroom), a threshold ramp can be used. Threshold ramps are short ramps (6-24 inches long), which can be placed against a doorway saddle. They come in heights of 1/2", 1", 1 1/2", and 2", and they create a smooth incline. If the saddle is removed completely from this type of room transition, a threshold ramp can be placed next to the higher floor, providing a ramped surface. Threshold ramps are easily found online, a number of medical and home equipment stores, with minimal cost ($30-$50).

- Ben

To ask Ben a question, simply email him at or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Team ALS: Running 4 A Cure in 2013

Team ALS is once again, an official charity partner of the ING New York City Marathon! With the cancellation of last year's Marathon, Team ALS members are more eager than ever to Run 4 A Cure in 2013! The Greater New York Chapter will have 10 official entries for this year's ING Marathon on November 3rd and also plans to welcome back several Team ALS alumni. For more information on how you can participate, please contact Kristen Cocoman at or (212) 720-3048.

Sponsor Highlight


We are thrilled to have the support of Preferred Home Health Care as a Silver Sponsor for the New Jersey Walks to Defeat ALS this season. Preferred Home Health Care & Nursing Services, Inc. has been providing compassionate and dependable medical and non-medical home health care services throughout New Jersey and Pennsylvania for more than 25 years. Their interest in serving the complex needs of ALS patients is especially meaningful, and we look forward to working with them to improve the lives of those in New Jersey impacted by ALS.

I Walk Because...

I Walk Because Video

ALS patients, family members and friends tell us why they Walk to Defeat ALS for The ALS Association Greater New York Chapter's "I Walk Because..." campaign. Click here to see some of the "I Walk Because" videos our teams have done with us. Send us your video and tell us why you Walk to Defeat ALS.

National ALS Registry

ALS Registry Widget Banner

It's been over two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.

If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit

For more information about the registry go to or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.

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 aloud.

If you live in New York please contact Christine Dunn at (212) 720- 3044 or If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or

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.

The next general meeting is Wednesday, June 26th.

A Summer Happy Hour is currently being planned and will likely be next month, in mid-July. Stay tuned for details.

For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here or contact Loren Domilici at or (212) 720-3060. 

Información en Español

The Greater New York Chapter website now has information on ALS and Chapter services in Spanish.  If you know someone with ALS who may need information in Spanish, please refer them to



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 Daryl Cochrane at or (212) 720-3051.


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 video together or reading, or even helping with some household chores.

If you are looking for a way to get involved please call Christine Dunn at (212) 720-3044 or email: for New York, or Debbie Schlossberg at (732) 710-8832 or email: for New Jersey.


Make a generous gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here. Call Loren Domilici, Development Manager, at (212) 720-3060 or email 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.


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 many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help 

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