ALS Association Greater New York Chapter

The ALS Association

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

ALS Banner - Fighting on every front to improve living with ALS.
March 2014 Monthly Update from The ALS Association Banner

[donate now] [register] [contact us] [tell a friend] [visit our website]

Icon Facebook Icon Twitter Icon Linkedin Icon Youtube

Help Honor the 75th Anniversary of
Lou Gehrig's Farewell Speech by
Supporting ALS Research!

The speech that Lou Gehrig gave at Yankee Stadium on July 4, 1939, two weeks after he was diagnosed with amyotrophic lateral sclerosis (ALS), has become one of the most famous and beloved moments in sports history where he described himself as the "luckiest man on the face of the earth.”

Less than two years later, Gehrig died from ALS, leaving a legacy behind of dignity and strength in the face of adversity and a streak of playing 2,130 games that held for five decades. Since that time we’ve made some great strides in research toward a cure for ALS but we still have more work to do.

That’s why in this 75th anniversary year of that summer day, we are launching an effort to honor Lou Gehrig’s legacy by helping to further the work of scientists seeking to find a cure for what has become known to many as Lou Gehrig’s Disease. We’re committed to raising $75,000 to fund ALS research and you can help.

There are two ways you can help us!

First, we hope you will be able to join us at Yankee Stadium on the afternoon of July 2nd for a special game with a tribute to Lou Gehrig by both the Yankees and Major League Baseball. We have secured access to two air conditioned luxury suites and have tickets available at the $275 and $475 levels.

We also hope you will help us meet our goal of raising $75,000 for ALS research by making a special donation of $75 or more before July 4th. In recognition of your donation, we will send you a commemorative 75th Anniversary Lou Gehrig bobblehead as our thank you.

Like Lou, our PALS also have a lot to live for and you can make a difference. Together, let's bid farewell to ALS!

For more information about July 2nd Yankee tickets or the Lou Gehrig bobblehead, please contact Joni at or (973) 783-5588.

Calendar of Events

June 8th – Saddle Brook Walk to Defeat ALS, Saddle River County Park, Saddle Brook, NJ. Visit to register or call Sarah Pattison at (212) 720-3042 for more info.

June 11th – YPG Happy Hour Networking Night at Brinkley’s in SoHo. 6pm – 9pm. Free admission. For more info, contact Ally Davis at or (212) 720-3049.

June 14th – Westchester Walk to Defeat ALS. Manhattanville College, Purchase, NY. Visit to register or call Sarah Pattison at (212) 720-3042 for more info.

June 20th – Milton Safenowitz Postdoctoral Fellowship for ALS Research Scientific Workshop and Awards Presentation Luncheon. Harmonie Club in Manhattan. Keynote Speaker - Bryan Traynor, MD from the National Institute on Aging. Contact Kim Peters at or (212) 720-3054 for info.

June 21st – Somerset Walk to Defeat ALS, TD Bank Ballpark, Bridgewater, NJ. Visit to register or call Sarah Pattison at (212) 720-3042 for more info.

Coming up in July - Long Island Walkers! Mark your calendars! The 2014 Kick-Off for the Long Island Walk to Defeat ALS will be held on Tuesday, July 22nd. For more info, please contact: Kristen Cocoman at or (212) 720-3048.

Join Us For An Update on ALS Research on Friday, June 20th

June Support Groups

Sunday, June 1st - 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
Topic: Open discussion
No meeting scheduled for July,
due to Independence Day.

Tuesday, June 3rd - 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
Topic: Open Discussion
Next month’s support group
meets: July 1st.


Tuesday, June 3rd - 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: July 1st.


Thursday, June 5th - 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
Topic: Open Discussion
Next month’s support group
meets: July 10th.


Tuesday, June 10th - 6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7
1st Floor, Rm G-41
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Open Discussion
Next month’s support group
meets: July 8th.

Tuesday, June 17th -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: Ben Lieman,
Greater New York Chapter
Topic: Assistive technology;
an asset for PALS.
Next month’s support group
meets: July 15th.


Please note change of date and time.
For newly diagnosed patients only, patients diagnosed within the last year, for more info please contact Debbie or Mary Ann.

Thursday, June 26 - 7pm
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: Newly diagnosed patients
Next month’s support group meets: July 19th.

For caregivers and patients.
Patient group - Every other Friday
from 3 to 4 pm through the summer.
Caregivers group - Currently on
a brief hiatus.
Contact: Sue Zimmerman, LCSW at (212) 720-3050

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

Join us for the Spring Walks in June. For more information or
to find a Walk near you, log on to WWW.ALSWALKS.ORG

Ask Ben: Trying Speech Devices Before Buying

I cannot walk or talk, but I use my computer a lot with scanning and a switch placed under my right pointer finger. Is there anything that will help me type faster?

– Mike, New Jersey

(Mike uses an alphabetical keyboard because it helps him know where each letter is. Alphabetical keyboards list the letters in alphabetical order, while a QWERTY keyboard layout, the letters are in no apparent order and requires greater observational skills to anticipate the location of each letter. )

Ultimately, the only way to tell which way is best, is to put them to the test. Pick a sentence from a song, or a famous quote. Spell it out five times using a QWERTY keyboard. How long did each time take? Was there improvement? Now try an Alphabetical Keyboard. How long did it take? Was there improvement?

Mike found the alphabetical keyboard was faster for him. But there's a third keyboard, very underutilized, called Frequency of Use. The location of the letters on the screen, is dependent on the use of that letter in general. Vowels are more common than a Q or Z, T is more common than a W, etc.

Standard row/column scanning, highlights each row going down, and then each column going from left to right. A Frequency of Use keyboard places the most common letters (A, E, O, T) in the upper left area of the keyboard. This reduces the time needed to spell your word when scanning. Even for partner assisted communication where someone else is pointing to the letters, a Frequency of Use layout can reduce the time it takes to communicate.

- 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.

Research News: U.S. F.D.A. Approves Start of
BrainStorm Stem Cell Trial for People with ALS

On April 27, the Israel-based BrainStorm Cell Therapeutics said the U.S. Food and Drug Administration (FDA) has approved the start of a mid-stage clinical trial of its adult stem cell treatment for people with ALS.

Dana-Farber Cancer Institute's Connell O'Reilly Cell Manipulation Core Facility will manufacture the company’s NurOwn cells for these two clinical sites. In addition, the trial will also be conducted at the Mayo Clinic.

Earlier clinical trials of this treatment have shown it was well tolerated and safe.

For additional information, read the Reuters article.

Running For Dad And A Cure This Father's Day!

Photo: Alicia Stein and her father, Steven taken right after he finished the Ironman world championship race in Kona, Hawaii.

Steven's Silver Lining was created by Alicia Stein in the effort to fund research, raise awareness and ultimately find a cure for ALS, which her father, Steven, has been battling for over nine years. Following in his footsteps, Alicia will be participating in a variety of endurance races, such as triathlons to use each fighting step as a vessel to raise money and awareness for ALS in his honor (and make her father proud!)

Alicia will be participating in her very first triathlon on Father's Day, June 15. She has already surpassed her original goal to raise $2,000 by race day in his honor. She has raised over $2,300 so far. Every stroke in the water, every spin of her bike pedals and every step that she runs will be on his behalf. The race includes a 500-meter swim in open water, a 10.5-mile bike and a three-mile run.

Prior to his diagnosis, Steven was a cosmetic dentist, IronMan triathlete, scholar and humanitarian, but still remains a loving husband, father and friend. His spirit, tenacity and fight have never dwindled as he runs this race of his life. His journey continues to inspire those closest to him to live life to the fullest as he did and continues to do every single day.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle. This crippling disease can strike anyone, and presently there is no known cause of the disease though support is bringing researchers closer to an answer. In the mean time, it costs an average of $200,000 a year to provide the care ALS patients need, which can be a financial and emotional burden on the families. Help us make a difference.

To learn more about Alicia and to donate to her fundraiser click here.

Join Us in Raising Awareness At Area
Minor League Baseball Parks This Summer!

Join the ALS Association Greater New York Chapter’s award winning Walk staff at a minor league baseball game this Summer to help raise awareness and promote the 2014 Walks to Defeat ALS

Thursday, June 5th at Somerset Patriots TD Bank Ballpark in Bridgewater, NJ. The Patriots will take on the York Revolution and the first pitch is at 7:05PM. There will be a post-game fireworks show.

Thursday, July 17th at Richmond County Bank Ballpark with the Staten Island Yankees. The SI Yanks will take on the Williamsport Crosscutters and the first pitch is at 7:00PM.

Thursday, July 24th at MCU Park with the Brooklyn Cyclones. The Cyclones will take on the Vermont Lake Monsters and the first pitch is at 7:00PM.

Tickets are complimentary but limited! Get them while supplies last! For more information or to reserve tickets to any of the above games, 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.

For information about the next general meeting of the Young Professionals Group please email

For information about the ALS Association's Young Professionals Group, please click here.

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 Kim Peters at (212) 720-3054 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. Kim Peters at (212) 720-3054 or 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 

To unsubscribe to this newsletter change your email preferences: click here.


Change your email preferences or unsubscribe