Help Us Fulfill Our Technology Holiday Wish List

The ALS Association Greater New York Chapter would like to thank you for helping make 2016 a great year!

We rely on your continued support to provide our PALS with the equipment and assistive technology loans they need to make their lives and the lives of their families as easy as possible. Through our Equipment and Assistive Technology Loan Program, we provide PALS with more than 1,000 pieces of equipment and devices each year. This enables our patients to remain more independent and have the ability to communicate for a longer period of time than would be possible without this equipment. Unfortunately, we often have a wait list for patients to receive equipment, so the more pieces of equipment we have for loan, the faster they get into the hands of our patients! This is why we need your help.

Please help us fulfill our equipment and assistive technology wish list by donating today!


Check Out Our Service Area Map

We serve patients, families and caregivers throughout the Greater New York and New Jersey area. See our map and check out the counties that we service.

Region 1: New York City.
The Bronx, Brooklyn, Manhattan, Queens, and Staten Island.

Region 2: Long Island.
Nassau and Suffolk Counties.

Region 3: Westchester and Hudson Valley.
Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster, and Westchester Counties.

Region 4: Northern and Central New Jersey.
Bergen, Essex, Hudson, Hunterdon, Middlesex, Monmouth, Morris, Passaic, Somerset, Sussex, Union, and Warren Counties.

To find the Patient Care Services representative in your area, call (212) 619-1400 or toll free at (800) 672-8857.


Ask Ben: Finding Comfortable Clothes For ALS Patients

ALS Assistive Technology Banner

My wife has ALS and she is to the point that she can no longer dress herself. She wears loose fitting clothes to make it easier for me to help her, and take care of her personal needs, however she feels uncomfortable wearing clothes so large. Is there anything I can do or buy to help her that would make her feel more comfortable?

– Phil, Rockland County, NY

There are specialty stores that focus exclusively on garments that allow for easier dressing and can also look nice. As with many forms of Assistive Technology, the assistance it provides is not just for the individual with the disability, but also provides assistance for the caregiver. Performing the fine motor skills needed to use buttons, zippers, and laces, makes dressing increasingly difficult for someone with ALS. However there are clothing options available that eliminate the need for such dexterity.

Adapted clothing may open and close from the side or back, whichever more easily allows for personal care without extensive maneuvering. Velcro offers easier opening/closing on shirts, blouses, pants, and dresses. While the fit of adapted clothing may feel the same to a person with ALS, it can make dressing and undressing easier for caregivers, minimizing the need to lift a patient as much, and thereby minimizing the stress to a caregiver’s back. You can search on the internet for adapted clothing, or contact me if you have any questions.

– 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.


Ask Ben: Does A Raised Toilet Seat Help?

ALS Assistive Technology Banner

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.

Senate Committee Approves $6 Million for ALS Registry

The Senate Appropriations Committee approved an additional $6 million to continue the National ALS Registry.
This action comes just a few weeks after ALS Advocates held hundreds of meetings on Capitol Hill during The Association’s National ALS Advocacy Day. It is clear that those meetings made an impact. Thank you to everyone who participated in DC and online through our virtual advocacy day.

This victory is only one step in the process to ensure that the National ALS Registry continues to be funded. Next, the bill will be voted on by the full Senate and then will go into conference with the House of Representative’s version of the bill.
We will keep you updated on the process and let you know when your outreach to your Members of Congress will be most effective. 

Amazing Day at Woodbridge, New Jersey Walk to Defeat ALS

On May 1, The ALS Association Greater New York Chapter kicked-off the Walk season with the Woodbridge Walk To Defeat ALS. Hundreds of walkers came out to enjoy an amazing day with beautiful weather. During the event people enjoyed entertainment by our Chapter’s favorite band, Woodfish. Of course they also got to eat some great food too.

Thank you to all of the PALS, families and friends for their ongoing support of our Walk to Defeat ALS program. We’d also like to extend a very special thank you to Woodbridge Mayor John McCormac and New Jersey State Assemblyman Craig Coughlin for participating in our Walk again this year.

Don’t forget, you can donate to the Woodbridge Walk to Defeat ALS until the end of 2011. All you have to do is click here.

To find another Walk to Defeat ALS near you click here.

See our slide show of images from the 2011 Walk to Defeat ALS below.


"4 ALS Awareness" Brings Opportunity and Hope in the Fight Against ALS

The ALS Association is honored to be a part of the 4 ALS Awareness initiative as we come together on July 4 to bring attention to the critical need for funding research into Lou Gehrig’s Disease. The inspirational story of Baseball’s “Iron Man” serves as a beacon that lights The ALS Association’s path forward in our quest to develop new therapies and find a cure for the disease that bears his name. As we highlight this tremendous cause in ballparks across our nation, people with ALS and families who are courageously battling ALS are supported by scientists across the world whose work is funded and directed by The Association. In the last decade, The ALS Association has invested nearly $50 million in our global research program that has engaged scientists in an aggressive and innovative search for the underlying causes of ALS and in the quest for swiftly finding new treatments for the disease.

Read more on the official MLB 4ALS blog.

To visit the ALS Association Homepage and learn more about ALS, click here.


New Facebook Page

If you are on Facebook, please click the link and befriend the NEW! ALS Association Greater New York Chapter Facebook profile.

We are migrating our Facebook page from the group page where it started to a real Facebook fan page. Why? Because fan pages act more like your regular Facebook profile pages allowing us better interactivity, sharing and a bigger presence on Facebook.

Unfortunately, Facebook does not have an easy method of transferring a business or nonprofit from a group to a fan page. Basically we have to alert all our Group members of the move and then abandon the old page for the new one. It will be work and we’ve spent a lot of time cultivating a following on our Facebook group page (almost 400 people!) but in the end I think it will be worth the effort.

Click here to become friends with us on the NEW! ALS Association Greater New York Chapter Facebook Page.


New Gene Mutation Discovery by ALS Association Consortium is Major Breakthrough in Lou Gehrig’s Disease Research

In one of the most significant breakthroughs in the recent history of ALS research, a consortium of scientists organized and funded by The ALS Association has discovered a new gene, ALS6 (Fused in Sarcoma), responsible for about 5 percent of the cases of inherited ALS. The discovery will provide important clues to the causes of inherited ALS, which accounts for 10 percent of all cases, and sporadic ALS, which occurs in individuals with no family history of the disease and accounts for the other 90 percent of cases diagnosed.
“This is a momentous discovery in furthering our understanding of ALS,” said Lucie Bruijn, Ph.D., senior vice president of Research and Development at The ALS Association. “A new gene provides a new piece of the puzzle we can use to shed light on why ALS develops, and where to focus our efforts on creating new treatments and finding a cure.”The results of this groundbreaking research are published in the February 27 issue of the prestigious journal Science. The project was led by Tom Kwiatkowski M.D., Ph.D., at Massachusetts General Hospital, and Robert Brown, M.D., of the University of Massachusetts School of Medicine, and ALS Association-funded researchers Caroline Vance, Ph.D., and Christopher Shaw, M.D., of Kings College in London. The project was supported by a consortium of leading ALS researchers from around the world, formed as part of The Association’s Gene Identification Project. Their success reflects an unprecedented effort to accelerate the search for genetic mutations linked to all forms of ALS.

Dr. Brown noted, “We are particularly delighted because our trans-Atlantic consortium has pursued the chromosome 16 gene for more than six years. The ALS Association has been an all-important partner in this search. This discovery should lead to new cell and animal models of ALS, which will accelerate drug development.”

“Global partnerships between investigators and funding agencies, such as the Motor Neuron Disease Association in the United Kingdom, are crucial to making these kinds of breakthroughs,” Dr. Bruijn commented. “This finding has opened up a whole new avenue of research and has the potential to uncover a common mechanism for most forms of ALS.”

The gene mutations were first identified by Dr. Kwiatkowski and were immediately confirmed by Dr. Vance, who also demonstrated abnormal accumulations of the mutant protein in cells cultured in the laboratory and the motor neurons of people carrying FUS mutations.

The gene, called FUS (“fused in sarcoma”), normally carries out multiple functions within motor neurons. These include regulating how gene messages (called messenger RNAs) are created, modified, and transported in order to build proteins. Some of these same functions also are performed by another gene called TARDPB encoding the protein TDP43, and mutations in the TDP-43 gene were recently linked to ALS as well.

“The fact that these two genes help perform the same function suggests that problems in this function may be critical in the development of ALS,” Dr. Bruijn said. “More research into exactly how these two genes work could ultimately lead to new treatments that are effective in slowing or stopping the progression of ALS and extending the lives of people with the disease.”

The mutations in the ALS6 gene were identified by detailed genetic sequencing in several families with an inherited form of ALS (familial ALS). Normally, the ALS6 protein works in the cell’s nucleus, but the mutations caused it to instead cluster outside the nucleus. Further work will be needed to determine precisely how this leads to ALS. With the gene in hand, scientists will be able to create cell and animal models containing the mutated gene, to examine in detail how the mutation operates and how it causes ALS.

“This suggests there may be a common mechanism underlying motor neuron degeneration,” according to Dr. Shaw. Motor neurons are nerve cells in the brain and spinal cord that control muscles. Motor neurons degenerate in ALS.

This is the second ALS-causing gene to be discovered in the past 12 months. SOD1, discovered in 1993, accounts for 20 percent of inherited cases of the disease. Mutations in the TARDP gene account for another four to five percent. The only well-defined causes of ALS are genetic. In both inherited and sporadic ALS, the disease symptoms and pathology are the same.

The possibility that ALS may be caused by several factors is the rationale for The Association’s policy of funding multiple genetic projects around the world and encouraging these leading geneticists to work together and share information to help locate disease-linked genes for faster, more accurate scientific results. By funding research on a global level, The Association helps put together “genetic pieces” of the ALS puzzle.

“Through our support of research such as this study, The ALS Association is committed to finding the causes of ALS, and using that knowledge to develop a cure as rapidly as possible,” Dr. Bruijn said. “We will build on the discovery of this new gene to carry that effort forward.”

ALS (amyotrophic lateral sclerosis) is a progressive, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost, leading to progressive paralysis. ALS is also sometimes called Lou Gehrig’s Disease, after the baseball player who was affected by it. The approximately 30,000 people in the United States annually fighting ALS survive two to five years from the time of diagnosis.

By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

For more information about The Association, visit our Web site at or call us at 800-672-8857.

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