ALS Association Greater New York Chapter

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

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PALS Make a Difference in Washington DC at the National ALS Advocacy Day and Public Policy Conference

Photo: Janet Palkewick with her son, Philip, at The Walk to Defeat ALS.

This coming May, ALS Association Advocates from all over the country will meet up in Washington, DC to visit with members of Congress. This powerful annual event in our nation’s capitol has brought about big wins for the ALS Association in support of patients, including:

• Generating more than $800 million in government funding for ALS research since 1998.
• Establishing regulations so that people with ALS automatically meet the medical eligibility requirements for Social Security Disability Insurance.
• Eliminating the 24-month Medicare waiting period for ALS.
• Working with the VA to make ALS a service connected disease, providing veterans with ALS and their survivors access to the highest level of health and disability benefits.
• Enacting the National ALS Registry to establish the single largest ALS research program ever created.

While much has been accomplished, there is still more to do and we are asking every person and family member affected by ALS to join the Greater New York Chapter delegation from May 7-9 this year for the National ALS Advocacy Day and Public Policy Conference.

Janet Palkewick, from N. Haledon, NJ, a mother of four who has lived with Lou Gehrig’s Disease for more than 20 years, says one of the most important reasons to go to Washington DC is to put a face on the disease.

“With these PALS all coming to the meetings, our Senators, Congressmen and their aides can personally see the ‘human side’ of ALS and what it does to families,” said Janet.

When she was diagnosed in 1989, Janet was busy raising three kids and had a fourth baby on the way. She says life became “a real challenge for all of us” and after her diagnosis she never expected to see her baby go to kindergarten.

“Not only have I been blessed to see him grow up but also I’ve lived to see each of my other three children graduate college, marry, buy their own homes and have children,” said Janet who now has six grandchildren.

For the past six years Janet has gone to Washington, DC for the Advocacy Conference, becoming an integral part of The ALS Association's delegation on Capitol Hill. She says she will continue to go “as long as I am able, to speak for my fellow PALS who are not able to and for the ones who have already lost their ALS battle.” Janet travels from her home in New Jersey to Washington, DC with her daughter every year and she has often also been accompanied by her sons and grandchildren.

“My 7-year-old grandson went last year and my 10-year-old granddaughter is going for her second time this year,” Janet said. "As you can see ALS Advocacy is important to my family!”

Lawmakers get to see firsthand how the disease affects more than just the patient. “During the meetings, all the members of our group – PALS and family members – share their unique ALS stories and how it has affected their lives,” described Janet. “At the end of each meeting, the leader of the group presents a request for support of the legislative and funding priorities that have been established by the ALS community.”

Out of everything Advocates have accomplished in Washington DC, Janet is most proud of the National ALS Registry. Janet was one of the first participants invited to do a test run of the website before it launched.

For those who are deciding whether to attend Advocacy Day this year, Janet says, “Go if you can because the accomplishments are so rewarding. You will be in a group with other people who have been at Advocacy Day previously, and you will never be physically, mentally, or emotionally alone. You will never regret what you are doing for yourself, PALS and all those whose lives have been touched by ALS. We are all connected.”

Join The ALS Association Greater New York Chapter from Wednesday, May 7th through Friday, May 9th for the National ALS Advocacy Day and Public Policy Conference in Washington, DC. Click here to register to become an Advocate today.

For information contact Development Manager Loren Domilici at (212) 720-3060 or

Calendar of Events

4/4 – Join NYC Walk Team “Stormin 4 Norman” & Hospital For Special Surgery at a Dinner Party Fundraiser 4 ALS on Friday, April 4th at Il Tesoro in NYC. For info call Sarah Pattison at (212) 720-3042.

4/5 – New York City Canvassing Day! Please join us from 11AM -1PM us as we spread the word around New York City about the Walk to Defeat ALS. hanging posters and displaying brochures in your neighborhood. Coffee and Bagels will be provided! For more details, please contact Rebecca Silver Fisher at (212) 720-3043.

4/6 – Children and Teens Bereavement Group. For more information, contact Sue Zimmerman at (212) 619-1400.

4/9 - Kicking off the Spring Walks! Calling all registered Team Captains for the New Jersey Walks to join us for the Walk Kick-Off and Awards Celebration. For more details, contact Sarah Pattison at (212) 720-3042

4/16 – Young Professionals Group Happy Hour at Public House. For more details, please call Rebecca Silver Fisher at (212) 720-3043.

Are you planning an event in your community to raise funds and awareness for ALS in 2014?

Whether it’s 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 suits you. For more ideas on how you can help raise funds and awareness for research & patient services through an event in your neighborhood, contact Ally Davis at

April Support Groups

Tuesday, April 1st
6 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
Speaker: Melissa Negrin-Wiener, Esq.
Topic: Future Planning & Community Medicaid
Next month’s support group
meets: May 6th.


Tuesday, April 1st
6:30 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: May 6th.


Thursday, April 3rd
7 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 Speakers: Sarah Pattison and Loren Domilici, The Greater New York Chapter
Topics: Walk to Defeat ALS and
National ALS Advocacy Conference
Next month’s support group
meets: May 1st.

Sunday, April 6th
2 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
Speaker: Richard Weinblatt, Esq.
Topic: Future Planning & Community Medicaid
Next month’s support group
meets: May 4th.


Tuesday, April 8th
6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7
Patient Dining Room
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Guest Speaker: Kim Peters,
The Greater New York Chapter
Topic: National ALS Advocacy Conference
Next month’s support group
meets: May 13th.


Please note change in date this month.
Saturday, April 12th
1 to 3 pm
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
Guest Speaker:  Sarah Pattison and Loren Domilici, The Greater New York Chapter
Topic: Walk to Defeat ALS and
National ALS Advocacy Conference
Next month’s support group
meets: May 17th.

Please note change in date this month
Tuesday, April 22nd
6 to 8 pm
Phillips Ambulatory Care Center
( Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Dept.
5th Floor Conf. Room
Contact: Jody Wiesel, PhD
(917) 699-9751
Guest Speaker: Sarah Pattison,
The Greater New York Chapter
Topic: Walk to Defeat ALS
Next month’s support group
meets: May 20th.

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

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 is now open!
Visit to register for a Walk near you this year!

The countdown to the first Walk to defeat ALS of the 2014 season is on!

Join us for the New York City Walk on Saturday, May 3rd at Hudson River Park’s Pier 45. For more information or to find a Walk near you, log on to WWW.ALSWALKS.ORG

Team ALS Joins the 2014 TCS New York City Marathon as a Bronze Partner!

Applications now being accepted to run with Team ALS in the 2014 TCS New York City Marathon! For information on securing a spot the Marathon and other races throughout the year, contact: Kristen Cocoman, Director of Marketing & Special Events at or (212) 720-3048. Reserve Your Spot Now!

Why not turn it into something positive by using your return to help out others. Your generous support can provide PALS with much needed services and medical equipment to help them maintain an independent and communicative life. For more information, please contact Loren Domilici at (212) 720-3060 or visit

Ask Ben: Options For Voice Banking

My mother was recently diagnosed with ALS. She is still able to speak, but you can see from slight changes in her walking that the ALS is beginning to affect her. Even her speech, though fully understandable is slightly different. We would like to record her voice for a time when she may no longer be able to be understood. Is voice banking the best way to do that?

— Annie, Middlesex, NJ

Before discussing what's best, let's clarify some terminology. Augmentative Communication devices typically use a computer generated voice. Male, Female, even children’s voices are available. The quality of these voices have improved immensely over the years. Voice banking is the process of storing one’s own voice. So when an augmentative communication device is used, the voice you hear is the voice of the person who previously recorded their voice.

There are two voice banking options. One is recording your voice outright. 'How are you', 'Let's go to the park', 'lift my leg, please'. You would anticipate the messages, names, phrases, you want stored, and record each one. This is considered Digitized Speech. The 2nd Voice banking option is Synthesized Speech. You create a computer file of all the sounds your voice makes from the alphabet and combinations of letters. These sounds then are 'synthesized' (by a computer program) to form words, using each sound from your voice.

For the outright recording, digitized speech, words and phrases are recorded on a computer, and saved as a .wav or .mp3 file. You then can program each file to a specific location on the screen of a computer, and you have created a touch screen with multiple .wav or .mp3 recordings. One screen can store and play multiple recordings. This is an easier way to go. Simply record the words and phrases you want over time. The limitation is that it is not a natural way of communicating. Our language is complex and we constantly interject unique words and phrases.

Sound Recorder on Windows is a simple way to store your own recordings.

Audacity is a more complex program for recording words and phrases.

The Synthesized method takes more time. ModelTalker is the primary program used to create one’s own voice file. It request 4-6 hours of speaking specified sentences into the computer. The program then creates a voice file that can be used on some augmentative communication devices. The versatility of this method is that anything you spell on the device, pre-programmed or unique is now spoken with the voice sounds of the person.

What’s best? It’s really up to you. Know that the communication devices as they come now have very understandable and good quality voices. If it is important to have a device use your own voice, look into ModelTalker. That will give you the most versatility. If you are not up for several hours of recording, use the digitized recording methods and identify specific phrases you want to record.

Please contact me with any questions about voice banking or augmentative communication.

- 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.

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 Thursday, April 24th at 6:30pm. 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 Loren Domilici at (212) 720-3060 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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