ALS Association Greater New York Chapter

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

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February 2014 Monthly Update from The ALS Association Banner

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The Power of Love
Comes Through For Mom

Alexander Mendez  using an eye gaze device.

For the Mendez family, love - and a little bit of assistive technology - has helped them to overcome one of the obstacles ALS has put in their way: Communication.

Alexander Mendez is a tech-savvy guy who, according to his mother Carmen, was good at computers, loved to play X-Box and talk to his friends about their shared interest in gaming.

“He's very smart,” Carmen said of her son. "Intelligent.”

But since being diagnosed with ALS, Alexander has slowly lost the ability to play his games, use his computer, and work at his job as a medical technician sterilizing surgical instruments. As his mother points out, like most ALS patients, he’s still as mentally acute as ever.

“He remembers his computer skills,” she said.

Having lost the ability to speak, Alex communicates with his family through facial gestures and blinking to signal yes or no.

”We had to figure out the right questions to ask him and sometimes it could take 20 minutes or more to determine what Alex was saying,” said his mother.

Caring for Alex at home became too much for Carmen, and nine months ago he was admitted to a nursing home. Carmen visits with him every day, and communication was always a challenge. She says it was Daniel, Alex’s step-brother, who first contacted The ALS Association Greater New York Chapter.

He said “they have a device to help Alex communicate.” It was an eye-tracking device that moves a cursor around a screen when someone moves their eyes.

Ben Lieman, ATP, MSW, Assistive Technology Specialist for the Chapter, was able to match Alex with a Dynavox Eye-Max from our equipment loan closet. The device allows Alex to look at specific letters to spell out what he wants to say. There is a speak button that he can look at too so the device “speaks” the words.

"Alex and I were so anxious for it to get here,” said Carmen. "Finally something to help him communicate with me.”

On a recent afternoon, Ben helped get Alex set up. His family was there when he first used the device, and almost immediately, he was able to create a simple message.

“The first thing he said was, 'I love you Mom,'” said Carmen.

Getting used to the device was a little tricky but his mother says he’s improving his skills every day.

“He has to master how to use it,” she said. "He’s trying. It’s excellent."

The communication device has opened up a new world for Alex. Now, his family is trying to get him onto the Internet so he can look up websites, do some reading, write emails and, according to his mother, possibly hook up with some old buddies online.

“He might be able to communicate with friends he made while playing games,” she said.

The ALS Association Greater New York Chapter was there when the Mendez family needed the help. And with a simple message of love, a patient was able to do something many of us have the ability to do every day: Tell those close to us that we love them.

Carmen said that she is very grateful for opportunity to communicate with Alex again. She called it a "Godsend.” Alex is happy too.

“Every time we ask, he says he loves it,” she said.

To donate gently used assistive technology equipment or for more information about The ALS Association Greater New York Chapter’s Assistive Technology Loan Program, please contact Ben Lieman, ATP, MSW at (212) 720-3057 or email

Heart of Giving

Valentine’s Day is a day to show your love and support for those who are near and dear to your heart. Making a donation in honor or memory of someone you care about is a great way to do this!

You can give the gift of hope, so that one day ALS will be a thing of the past. Designate your gift for your loved one today. Visit to donate or contact Loren Domilici at (212) 720-3060 or

Calendar of Events

2/13 - YPG Valentine's Day Happy Hour. 6:30 to 9 pm at Brinkley's NYC, 406 Broome St., NYC. For info, please contact Loren Domilici at (212) 720-3060 or

2/15 - YPG Spin for a Cause. FLYWHEEL, 470 Columbus Avenue, 2nd Floor, NYC at 3pm. For more info or to reserve a spot, please email Loren Domilici at or Rebecca Silver-Fisher at - or call (212) 619-1400.

2/28 - 8th Annual Big Ed Benefit for ALS. Hudson Station Bar and Grill, 9th Ave. (at 35th Street.), NYC. For info, please contact Ally Davis at (212) 720-3049 or

3/16 - Team ALS will once again be Running 4 A Cure in the New York City Half Marathon!For more info on how you can support Team ALS, please contact Kristen Cocoman at (212) 720-3048 or


February Support Groups

Sunday, February 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: ALS - Healthy Eating &
Guest speaker: Lorraine Danowski, RD
Next month's support group meets March 2nd.

Tuesday, February 4th
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: ALS - Healthy Eating & Supplements
Guest speaker: Lorraine Danowski, RD
Next month's support group meets March 4th.


Tuesday, February 4th -
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: Open Discussion
Next month's support group meets March 4th.


Thursday, February 6th
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market Street
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN
(732) 710-8832
Guest Speaker: Betsy Thomason, BA, RRT, Respiratory Therapist
Next month's support group meets March 6th.


New Location for this month only: Patient Dining Room
Tuesday, February 11th
6 pm to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital
Bldg. 7, 1st Floor
White Plains, NY
Contact: Helen Mayer, RN
(845) 520-0952
Topic: Open Discussion
Next month's support group meets March 11th.


Saturday, February 15th
1 pm to 3pm
Rutgers Robert Wood Johnson Medical School
Medical Education Building
Room 108A
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN
(732) 710-8832
Topic: Open Discussion
Next month's support group meets March 15th.

Tuesday, February 18th -
6 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: Role of Caregivers in
a patient’s life and open discussion
Next month's support group meets March 18th.

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

Save the Dates
2014 Walk to Defeat ALS

Saturday, May 3
New York City, NY
Sunday, May 18
Long Branch, NJ
Sunday, June 8
Saddle Brook, NJ
Saturday, June 14
Westchester, NY
Saturday, June 21
Somerset, NJ
Saturday, Sept. 20
Long Island, NY
  Sunday, Oct. 19
Hudson Valley, NY

Registration for the 2014 Walk to Defeat ALS season will be open on February 1st!
Visit to register for a Walk near you this year!

Art Therapy Helps Kids Cope at The ALS Association Greater New York Chapter's Childrens Day

Drawings from The ALS Association Greater New York Chapter Childrens Day.

When children have a family member who has been diagnosed with ALS, it’s often hard for them to express how they’re feeling. This past December, The ALS Association Greater New York Chapter hosted a special day that included an art therapy program to help the children in our area who have family members living with ALS to express their emotions and to connect with other kids who are coping with the same situation

This is not the first time the Chapter has run a Children’s Day activity. Throught the generous support of Chapter Board Member Marilyn Safenowitz, we have held five events over the past three years. However, according to Susan (Sue) Zimmerman, LCSW, Patient Services Coordinator, for the Greater New York Chapter who heads the Childrens and Teens program, this was the first time a Licensed Creative Arts Therapist participated in the program to help work with the children. Along with sharing feelings about having a family member with ALS, the event also built in a bit of fun for the kids including a pizza lunch, a make-your-own ice cream sundae bar for dessert, and a holiday goodie bag to take home.

Sue wanted to add art therapy to the program to see how children might express themselves through art. "I'm a trained therapist, but not in art therapy and we wanted this to be a truly therapy-oriented event,” she said. Sue and social work intern, Jenny Lundeen, called in Art Therapist Erika Mayer, LCAT, RYT to help them with the group. Erika holds a Masters degree in Creative Arts Therapy and Counseling from The College of New Rochelle..

One of the challenges when working with children, according to Erika, is that they often do not know how to express their emotions and art is a great way for them to do that. The artwork that they create can open a door to explore feelings that are not often verbalized. "As an art therapist, the use of metaphor plays an important role,” Erika said. “At times, individuals will create an image and connect to an emotion that they did not realize they were experiencing.”

Erika asked the kids to close their eyes and imagine general things they did at home like eating breakfast or having friends over. She then asked them to think about various emotions they feel throughout the day. To help them think about a wide range of emotions, while their eyes were closed, Erika read a list of possible feelings the kids might experience. She then asked the children to draw one or more of the feelings they connected with.

“Once they finished drawing about the feelings they connected with, we had a group discussion,” Erika said.

The session lasted a little over an hour, as Erika encouraged the kids to talk about their images. She said that strong emotions came out in their drawings such as, confusion, sadness, loneliness, and love. Erika felt that the kids were all "very grown up for their ages, had great insight, and supported one another.”

Sue, Jenny and Erika agreed that the group was a success. Art became a great way to explore emotions without overwhelming the kids when they might not understand how they are feeling themselves.

"Using art as a tool in therapy creates a less invasive environment,” Erika said. "Children are able to express themselves without speaking. A goal in art therapy is to have kids or adults speak about their images and how they relate to them, but if someone does not want to talk about their art, it’s OK. Creating an image is the first step to connecting to deeper feelings and emotions.”

Erika has also visited the ALS Support Group in Hudson Valley to work with adult PALS and caregivers and plans to visit the Westchester Support Group in February.

If you’d like more information about this program, contact Sue Zimmerman, LCSW, at The ALS Association Greater New York Chapter at (212) 720-3050 or

Ask Ben Logo

We have a split-level home and most of our family time occurs upstairs in the kitchen and dining room. Our bedroom and bathroom are also upstairs, all on one level. Since my husband was diagnosed with ALS and he is having difficulty walking, I am worried about his going up and down the stairs. We have a finished basement, but would need to re-do the bathroom. What decisions do other families make related to these choices?

— Gina, Nassau County

There are a range of factors to take into account when making an ‘upstairs / downstairs’ decision. Though the focus should be that the person with ALS is comfortable, the impact on caregivers also needs to be part of the discussion. Getting in and out of a home on one level is certainly easiest, with no stairs to overcome. But there is a ‘loss of access’ to the rest of the house ( i.e. the old bedroom, dining room, kitchen). There is a family impact, as conversations about the Olympics, Politics, or homework, etc. which might naturally occur in another location, now shifts downstairs. These ‘social changes’ are real and should be discussed in advance with all involved.

Some families seek continuity in their lives, and work to keep things as similar as possible. The impact of staying on the upper level of the home requires addressing the outdoor and indoor stairs. Who would be pushing the wheelchair up and down a ramp? Who is assisting with transferring from wheelchair to stairglide? Who is assisting in the shower or bath? Though family activities can occur in similar locations to before the modifications, there is greater dependence on caregivers. They are usually ready and willing, but are they physically able now and in the future?

An outdoor ramp to the front door, and an indoor stair glide to the upper level would maintain access upstairs. To avoid the issue of stairs, another option is to create a roll-in shower and bedroom in a finished basement. This enables someone with ALS to access to physical needs all on one level of the home, bathroom and bedroom. With no stairs, a person with ALS would have easy access into the ground level, perhaps through the garage.

When considering these options, get as much information as possible. Finances are a significant part of the decision. Get cost estimates for the construction and plumbing for a downstairs roll-in shower, and the stair-glide and outside ramp for staying upstairs. How far out into the yard might the ramp need to go? Staying upstairs might require some alterations to the upstairs bathroom. Is there room for a roll-in shower upstairs? Talk about the impacts of each choice. Whatever decision you make, you want everyone to be on-board.

- 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!

National ALS Registry Banner

The federal government took a major step in the fight against Lou Gehrig’s Disease when the Agency for Toxic Substances and Disease Registry (ATSDR) announced the full implementation of the National ALS Registry. The National ALS Registry is a program to collect, manage and analyze data about persons with ALS (PALS). It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among PALS.

Additionally, the Registry provides updated links for participant resources like ALS clinical trials. 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,

For more information about the National Registry or to get help enrolling, please contact Chris Dunn, Patient Program Coordinator, at (212) 720-3044 or

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 Feb. 12. 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 Regina Ackley at (212) 720-3047 or


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 click here or learn how you can help people with ALS. You can also 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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