ALS Association Greater New York Chapter

The ALS Association


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The 2013 Walk to Defeat
ALS Season is Here!

Walk Start 2012 EMU

There's definitely still a chill in the air and Spring may feel far away, but it's already time for the 2013 Walk to Defeat ALS Season! The 2013 Walk to Defeat ALS registration pages will be open for business on February 1st. Following an astounding 2012 Walk season, we are very excited to gear up for this year's Walks. For more details or to register for any of the seven Walks throughout the region, click here to visit the Walk website or call the Special Events team at (212) 619-1400.

Team ALS Joins the
2013 New York City Half Marathon

Team ALS has been selected as a Participating Charity of the 2013 New York City Half Marathon on Sunday, March 17th. If you are interested in applying for one of the available spots or have questions, please contact Kristen Cocoman at (212) 720-3048 or email:

Click here for the application. Come do the 13 in '13!

Valentine's Day: Intimacy,
Romance & ALS

As Valentine's Day approaches, thoughts of romance and intimacy often ensue. For those couples with a spouse or partner living with ALS, this is a good time to discuss such issues. While the progression of ALS can be cruel on many levels, the possibility of losing the basic human ability to express and receive intimacy is one that doesn't just affect the body, but also the heart and mind.

Sexuality and intimacy are basic human needs. Sexual desires and abilities may not be affected by the disease progression, except for the physical limitations imposed by discomfort, muscle weakness and fatigue or low energy levels. However, emotional reactions to how one's disability affects sexuality can result in inhibitions. Embarking upon previously unchartered territory in your relationship may cause anxiety, inhibiting sexual performance or even basic romantic gestures. The person with ALS may worry about not being able to please a healthy partner or the healthy partner may feel guilt or resentment stopping them from engaging on that level. They may even worry about hurting the person with ALS.

ALS can rob one of so much, but with patience and an open mind, intimacy does not have to suffer. Intimacy in a relationship extends far beyond the bedroom. Simple acts such as listening to music together, dressing up, lighting candles, and caressing are all ways of keeping romance alive. There are any number of creative ways to maintain a level of intimacy that can be both satisfying and allow a relationship to continue to grow.

While muscles may atrophy and motor functions diminish, ALS does not affect one's sensory nerves. Because of this, some wonderful alternative ways to experience sensuality may include holding hands, hugging, touching or massaging one's partner, even when you do not plan to have sex. Engaging in activities that could stimulate all of the senses may make romantic contact more enjoyable.

Honesty and open dialogue with your partner is key. Communicating your likes and dislikes and knowing your partner's likes and dislikes will ease anxiety and help you achieve greater intimacy in your relationship. Speaking with a professional can also help you deal openly with your concerns and expectations.

For a listing of resources, visit our website at and look for the February Monthly Update online. Learn about specific tips on intimacy and romance in your relationship.

To speak with a care professional about intimacy and ALS, contact Adele Marano, Director of Patient Services, at (212) 720-3059 or email

Happy Valentine's Day to you and yours!

February Support Groups

Sunday, February 3rd
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN, 
(516) 946-5467 & Jody Wiesel, PhD
(917) 699-9751
Topic: Welcome to new Patient Services Coordinator Cindy Keyser-Posner, LMSW.

Tuesday, February 5th 
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: Welcome to new Patient Services Coordinator Cindy Keyser-Posner, LMSW. 

Tuesday, February 5th
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: New rules on
Medicare & Medicaid 2013.

Thursday, February 7th
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ 
Contact: Debbie Schlossberg, LMSW
(732) 710-8832
Topic: Open Discussion.

Saturday, February 16th
1 pm 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
Topic: Open discussion.

February 19th
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.

Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
(212) 720-3050

For more information about our Support Groups go to the Chapter website:, Patient Services section or call (212) 619-1400.


YPG Winter Event

The Young Professional Group (YPG) of the Greater New York Chapter is hosting its Winter Event on Friday, February 22nd at the Chelsea Piers Sunset Terrace at The SkyRink. This event is the showcase event for the YPG, raising essential funds and awareness for ALS through a young professional network of supporters. We hope you’ll join us. For more details, please contact Loren Domilici at or Rebecca Silver Fisher at or call them at (212) 619-1400. For tickets, click here.

The YPG generates awareness in the fight against ALS by developing fun, sophisticated and meaningful opportunities for their peers to get involved in the cause. For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.

Welcome New Staff

We are pleased to announce the new addition of a social worker on Long Island - Cindy Keyser-Posner, LMSW. She began just last month and will be travelling throughout Long Island making home visits to offer assistance and serve as critical support for patients and their families. She will work closely with the Long Island Nurse Coordinator Theresa Imperato.

The ALS Association Greater New York Chapter is pleased to have Cindy as the Patient Services Coordinator for the Long Island ALS Care Management Program. This new role was made possible by the generosity of the Fay J. Linder Foundation.

Cindy has been a social worker for nearly twenty years, having previously worked for the Legal Aid Society and CancerCare, as well as various nursing homes and hospice centers. She is a graduate of SUNY Stony Brook (undergraduate & graduate) and Adelphi University School of Social Work.

Raised in North Massapequa, Cindy now resides in Huntington Station with her husband of sixteen years Rob, a computer systems engineer. In her spare time Cindy and her writing partner can be found in their recording studio working on various music projects.

She can be reached at (631) 416-2767.

Welcome Cindy!

ask ben logo.jpg

It is becoming increasingly difficult to stand up after using the toilet. Would a raised toilet seat be a good option and make it easier for me to stand?

- Terry S., Nassau County, NY

A raised toilet seat is a sturdy plastic cylinder placed on the toilet bowl to enable one to sit higher than the standard 15” toilet. They generally add 2” - 6” of height. This is an important consideration when standing up becomes difficult. Standing from a higher seated position, requires less effort than from a lower position. For a raised toilet seat to be safe, it must be ‘secured’ (A bracket tightened under the lip of the toilet). Without this bracket, a raised toilet seat can easily tilt or tip when uneven pressure is placed on it.

Another idea for sitting higher on a toilet is a standing or rolling commode. These provide a separate layer to sit on above the toilet and without the pail. Look for models that allow you to adjust the height. There are ‘up-lift’ commodes as well. These have seats with a mechanism that actually rise to assist you in getting to a standing position.

Another option would be to add grab bars. There are a couple of different kinds of grab bars which, if you have sufficient arm strength, can further help to lift yourself off the toilet. There are easy to install grab bars that attach to the back of the toilet seat itself, as well as rest on both sides of the toilet. There are also grab bars that secure directly to the studs in a wall, which can be placed next to and behind a toilet. These come in varying lengths to accommodate the space available. These options are specific for such use and provide needed safety. No matter how handy and convenient, please do not use a towel rack that happens to be in close proximity. It is not designed to accommodate the grip or pressure when standing up.

Any of these options can be helpful for both the person with ALS, as well as his/her caregiver. Because everyone has different dexterity and strength, and bathroom designs vary widely, it is best to have a conversation with your physical or occupational therapist to determine what would work best for you.

- 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.

Research News

Biogen Announces It Will Discontinue Development of Dexpramipexole Based on Phase 3 Trial Results

The pharmaceutical company Biogen Idec reported last month its top-line results of EMPOWER, a Phase 3 trial investigating the drug dexpramipexole (Dex) in people with ALS. While Dex showed promise in earlier trials, the latter stage trial revealed certain failures in efficacy that necessitated its discontinuation. Whereas, this is certainly disappointing, such setbacks often allow scientists to build on past research and explore new and better avenues for a cure and effective treatment.

The ALS Association is encouraged that Biogen has made a commitment to continued focus on ALS.

For more information on this research news, please click here.

Study Finds That Neurons Can Be Reprogrammed to Take on New Identities

In a recent study supported by The ALS Association and funded through The Milton Safenowitz Post-Doctoral Fellowship Program, researchers have for the first time reprogrammed a neuron from one type into another and have done so in a living organism. The finding will help scientists better understand how to control neuronal development and may one day aid in treating diseases in which neurons die, such as ALS. The study was published in the journal Nature Cell Biology.

Click here for the full statement on this important discovery.

Chapter Walk Program Raises $2 Million in 2012

Walk to Defeat ALS Volunteers

Congratulations once again to all of the PALS, team members, individual walkers, friends and families, and volunteers who participated in the 2012 Walk to Defeat ALS. Your efforts helped to raise a record-breaking $2 million dollars in the fight to defeat ALS! The Greater NY Chapter is the first ALS Association Chapter to ever achieve this milestone. Thank you.

National ALS Registry

ALS Registry Widget Banner

It's been 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

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.

The 2013 ALS Advocacy Day & Public Policy Conference will take place May 8-10 in Washington, DC. Registration begins on Monday, February 11th. We hope to see you at Advocacy Day!

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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