ALS Association Greater New York Chapter

The ALS Association

Janary 2014 Monthly Update | The ALS Association Greater New York Chapter

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December 2013 Monthly Update from The ALS Association

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ALS Association
Greater New York Chapter
20th Anniversary

The ALS Association Greater New York Chapter

This year marks the 20th anniversary since the founding of The ALS Association Greater New York Chapter. On behalf of the Board and staff of the Chapter, I extend much heartfelt appreciation for all of the support we have received from the ALS community over the past two decades.

Twenty years ago the Chapter began with a few dedicated volunteers, who formed a support group in Manhattan, seeking to care for their loved ones living with ALS and share information and resources to help others. Today the Greater New York Chapter serves more than 750 patients in 26 counties throughout the greater New York / New Jersey region.

In the two decades since our founding, thanks to the amazing dedication of so many donors, volunteers, and exceptional staff, the Chapter now supports four multidisciplinary ALS clinics, hosts seven monthly support groups, organizes seven Walks to Defeat ALS, and maintains three equipment loan warehouses, loaning nearly 2,500 pieces of durable medical and augmentative communications equipment to our patients free of charge in the last year alone.

We have a committed team of healthcare professionals -- nurses, social workers, assistive technologists -- providing essential support and services to patients, families, and caregivers. These services span four regions throughout the metropolitan area -- New York City, Long Island, Westchester County & the Hudson Valley, and Northern & Central New Jersey.

We continue to advocate in Washington, DC for greater support from our Federal government. Over the years we have successfully advocated for a waiver of the 24-month waiting period for Medicare benefits, changed regulations at the Department of Veterans Affairs to recognize ALS as a military service-connected disease, and have been at the forefront of the establishment of a National ALS Registry to better understand how many Americans are affected by ALS and why.

Our Chapter has contributed more than $7 million toward cutting-edge ALS research, which has resulted in some significant advances. We have funded the early work of some of today's top ALS scientists in areas including stem cells, genetics, biomarkers, drug development, and clinical research. We are most proud of The Milton Safenowitz Post-Doctoral ALS Fellowship Program, which was established ten years ago to invest in young scientists to ensure growth and advancement in the field of ALS research for the future. We are encouraged that we are closer than ever to finding a meaningful treatment and a cure.

As we move forward, we ask you to re-double your efforts and become a Partner in the fight to end ALS and renew your generous support. Your contributions will help us continue the work of caring for those living with Lou Gehrig's Disease, provide caregivers with the tools they need, enhance our Advocacy efforts, and continue critical funding for scientific research to bring about an effective treatment and a cure for ALS. Every gift makes a difference.

While we mark this milestone anniversary, we continue to look ahead toward a world without ALS. Twenty years have come and gone so fast, and along the way we have lost many friends to this terrible disease, but our resolve remains strong, as we honor their memory by continuing to fight ALS every day. We are so grateful for your support. Together, we have and will continue to improve the lives of people with ALS in our community.


Dorine Gordon
President & CEO

Calendar of Events

1/12 Join us for the first community fundraiser of the year! Fire for Life, a CrossFit event with members of the FDNY, will be held at Reebok CrossFit in Manhattan. For more information, contact Kristen Cocoman at or (212) 720-3048 for more information.

1/15 Monthly YPG meeting. For information, contact Loren Domilici at (212) 720-3060 or

2/1 Mark your calendars! Registration for the 2014 Walk to Defeat ALS season is OPEN! Visit to register for a Walk near you this year!

January Support Groups

Thursday, January 2nd
7 pm to 8:30 pm
Kessler Institute
300 Market St., Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW and
Mary Ann Mertz, RN
(732) 710-8832
Topic: Open discussion
Next month's support group: Feb. 6th.

Sunday, January 5th
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Rd., Downstairs
Plainview, NY
Contact: Theresa Imperato, RN
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: New Year’s Resolutions
Next month's support group: Feb. 2nd.

Tuesday, January 7th
6 pm to 8 pm
Stony Brook University, Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: New Year’s Resolutions
Next month's support group: Feb. 4th.


Tuesday, January 7th
6:30 pm to 8:30 pm
Ambulatory Surgery Center
Building C - 3rd Floor
200 Westage Business Center, Fishkill, NY
Contact: Helen Mayer, RN
(845) 520-0952
Topic: Presentation by Art Therapist
Erika Mayer, MS L-CAT, RYT 
Next month's support group: Feb. 4th.


Tuesday, January 14th
6 pm to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Building 7
1st Floor, Conference Rm G-41
White Plains, NY
Contact: Helen Mayer, RN
(845) 520-0952
Guest Speaker: Gioia Ciani, PhD, Occupational Therapist
Next month's support group: Feb. 11th.

Saturday, January 18th
1 pm to 3pm
Rutgers Robert Wood
Johnson Medical School
Medical Education Building
Rm 108A, 180 Somerset Street
Contact: Debbie Schlossberg, LMSW and
Mary Ann Mertz, RN
(732) 710-8832
Guest speaker: Steve Fasulo, Wilpage Medical
Topic: Power Wheelchairs basics
Next month's support group: Feb. 15th.

Tuesday, January 21st
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th streets), Neurology Dept.
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open discussion
Next month's support group: Feb. 18th.

For caregivers and patients.
Caregivers group - every Friday
from 4 pm to 5 pm.
Patient group - every Friday
from 3 pm to 4 pm.
Contact: Sue Zimmerman, LCSW
at (212) 720-3050

New Year’s Resolutions
to Help Fight ALS!

The New Year is a time of reflection, renewal, and of course, resolutions. As we celebrate the dawn of 2014, we look forward to the day when there is a cure for ALS. Until then, we can all do our part in the fight. Here are 12 resolutions you can do (one per month) to help fight ALS all year round:

1. Donate Make a gift to The ALS Association Greater New York Chapter and remember to check if your company offers matching gifts.

2. Volunteer Help people living with ALS and their caregivers with simple tasks to improve their lives. You can also volunteer at one of the several events the Chapter holds each year, including the Walk to Defeat ALS. Contact Chris Dunn at

3. Advocate Join us in Washington, DC in May and advocate for ALS related issues to your Senators and Member of Congress. If you can’t make it to Washington, sign a letter to your representatives showing your support for more ALS government support. For more information, Click Here. or contact Daryl Cochrane at (212) 720-3051 or

4. Participate Take part in the ALS Association’s signature fundraising event the Walk to Defeat ALS - There are seven Walks throughout the region. Find one near you. Take strides to defeat ALS. Contact Sarah Pattison at or (212) 720-3042 for more info.

5. Join Be a part of Team ALS Running 4 A Cure and connect with dozens of runners throughout the region who participate in a variety of runs 5K, 10K, half marathon, and in the New York City Marathon. If you're just getting started or are an experienced runner, you can be part of Team ALS and raise funds and awareness. Contact Kristen Cocoman at or (212) 720-3048 for more information.

6. Write a Letter Write a Letter to the Editor of your local newspaper and raise awareness about ALS in your community. Or you could even blog your story. Share it with us and we could post it on the Chapter blog as well. Tell your story from the heart and get it published. Contact Manager of Communications, Daryl Cochrane at (212) 720-3051 or to help find your local newspaper. Speak out.

7. Get Connected If you’re on social media, join one of the numerous platforms the Chapter provides and stay informed between Monthly Updates. Be a part of our 7,000+ member community on Facebook, Twitter, and LinkedIn throughout the region.

8. Organize an Event Plan an event in your community to raise funds and awareness for the ALS Association. Whether it is a bake sale at a school, a rummage sale at your church, a poker night at your home, or a happy hour at a bar or restaurant, you can organize an event in your community that best suits you. We have a team of people here to support you. Contact Ally Davis at or (212) 720-3049 for more information.

9. Make Financial Plans Include the ALS Association Greater New York Chapter in your will, donate securities to the Chapter, or take advantage of our planned giving program. There are a number of other creative and financially sound ways to make a gift. Contact Loren Domilici for more information at or (212) 720-3060.

10. Register If you’re living with ALS, we encourage you to enroll with the National ALS Registry and be counted. Complete the surveys so the Centers for Disease Control & Prevention can better understand the nature of ALS and bring us one step closer to a cure. If you're already registered, there are two NEW surveys just released by the CDC that are now available for you to complete. The Registry also includes a bio-repository and clinical trials notification features that allow patients to directly participate in the research process. For more information and assistance on how to register, contact Chris Dunn at

11. Take in a Game Throughout the summer, the ALS Association teams up with Minor League Baseball to raise awareness for ALS throughout the country. Look for an ALS Awareness Day with the MiLB team nearest you and head out to the ballgame. ALSA is an official Charity Partner of Minor League Baseball. Contact Kristen Cocoman at or (212) 720-3048 for more information.

12. Wear it and Share it You can raise awareness for ALS through fashion or on your car. Purchase a stylish ALS awareness bracelet or affix a bumper magnet for your car and raise awareness for ALS with those you pass by every day. Visit the online Chapter Store.

And there's one more thing that you can do that is the most basic way to raise awareness about ALS…

Talk about it Whether you’re living with ALS or know someone who is or has, tell your story to your friends and colleagues and make your ALS story heard. The more people know about ALS, the more understanding we can generate and the more hope we can provide. It can be very painful to talk about, but your voice is needed to help spread the word.

If you do all the resolutions, or even just one, you will make a difference. If you need any help along the way, the staff of the ALS Association Greater New York Chapter is here to assist you and get you started. Call us at (212) 619-1400 or email and we’d be happy to discuss ways for you to get involved in the fight against ALS. From the Chapter Board & Staff Happy New Year!

24th International Symposium on ALS/MND

The 24th International Symposium on ALS/MND was held in Milan, Italy from December 6th to 8th. Over 900 delegates attended the conference, which brought together experts in the latest clinical and scientific research from around the world.

The ALS Association Greater New York Chapter was represented by Director of Patient Services Adele Marano and Nurse Coordinator Theresa Imperato.

Adele and Theresa also participated in the International Alliance of ALS/MND Associations’ Allied Professionals Forum on December 5th. Click here to read highlights from the symposium.

ask ben logo.jpg

My wife has ALS and we live in an apartment in Manhattan. We would like to ‘get around town’ in the City more.  Though she can get around in the apartment okay, she uses a wheelchair when we go outside.  Is there a means of transportation for persons using a wheelchair, other than Access-a-ride?  I hear the wait can be long and you often have to go to other people’s stops along the way.  What other transportation options are available?

-- Michael, New York, NY

Well Michael, you're right about Access-a-ride. Though there have been improvements in the Access-A-Ride process, there are times when your trip will need to make stops for others along the way. The MTA website ( gives a good overview of the options available, and they do a better job now of predicting the time of pickup and drop-off (this is especially beneficial in the middle of Winter, like now, as well as in the heat of Summer). However, you may not be aware, but Access-A-Ride in New York City also provides car service for those eligible individuals who do not need to remain in a wheelchair during the ride, and who can also transfer independently into a car.

The entire bus system is also accessible, with 235 local bus routes and 64 express bus routes throughout the five boroughs. If one is able to manage getting to, and being on a bus, this may also be a good option. The subway system has elevators in over 90 stations, and while they usually work well, you may want to contact 511 and follow the menu system to find daily updates on elevator and escalator outages. (From outside of NYC you can call 212-NEW-YORK and ask to be transferred to 511). A person using the subways should have someone with them to assist throughout the duration of their trip.

Accessible dispatch taxi service is a fairly new and unique program where you can take a cab anywhere in NYC, as long as you originate your trip in Manhattan. With the new dispatch system, you can contact a program representative in advance and make a reservation, either online, by texting, or by phone, and a wheelchair accessible taxi will come to any Manhattan location you request. Give them a minimum one-hour advance notice. They will contact you within a few minutes of their arrival to confirm you are still interested in your reserved ride.  Once they arrive, it is a standard taxi fare to wherever you are going. Give them a call (646) 599-9999, or click here for the accessible dispatch website in New York City.

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. 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.

National ALS Registry -- Bigger & Better!

Some new and exciting changes have arrived to the National ALS Registry and if you're a PALS or someone caring for a PALS, you should know about it and make sure to enroll.

Over the past year, the National ALS Registry expanded and can make a difference in your life. The Registry, run by the U.S. Centers for Disease Control & Prevention, has a bio-repository. A bio-repository is a national bank of biological samples like blood or tissue. Connecting samples to information already being collected from PALS through the Registry will help scientists better understand the cause(s) of ALS by providing researchers with access to ALS biological samples. These samples may be studied along with demographic and other environmental and occupational data currently being provided by PALS to the Registry.

Additionally, the Registry now notifies PALS of clinical trials for which they may be eligible.

To start off the New Year, the Registry has added two more surveys to gain more information from patients and provide researchers with even more detailed information that may lead to an eventual treatment or cure. The new surveys include a survey on clinical symptoms and an open-ended comment survey. The clinical symptoms survey asks questions related the onset of disease. The open-ended comment survey gives PALS a chance to share what they think may have contributed to their disease.

Visit to enroll in the National ALS Registry. If you're already enrolled, simply login to your account to access the new surveys. For more information about the National Registry or to get help enrolling, please contact Chris Dunn, Patient Program Coordinator, at (212) 720-3044 or

TEAM ALS - NYC Half-Marathon

2014 is just beginning, but Team ALS is already up and…running. Be a part of the team and take strides to strike out ALS. For information on securing a spot with Team ALS for the 2014 NYC Half Marathon and other races throughout the year, please contact Kristen Cocoman at or (212) 720-3048.

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 of the Young Professionals Group will be Jan. 15 at 252 West 37th Street, 17th Floor at 6:30 pm. For information please email

For information about the ALS Association's Young Professionals Group, 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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