ALS Association Greater New York Chapter

The ALS Association

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

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Patients and Families Tell Us Their ALS Stories

During May, ALS Awareness Month, we asked you to tell us your story. The response was overwhelming. People wrote to us to tell us of their loved ones who fought this disease and PALS took the time to let us know their personal stories and how they live with ALS every day.

We published them all on our website in hopes that the stories help the public put names and faces to the letters “A-L-S” and understand the urgent need for more awareness and support.

Please read through a summary of some of the stories below. To read them all, head to our website at The more people who know about ALS, the better chance we have of funding research to find a cure and further our mission of providing critical care and support to patients and their families.

There is No Norm When it Comes to Norm
by Melanie Holzberg

In fact, Norm Holzberg upstaged the rabbi at his own funeral. Norm wrote his own eulogy, holding the audience captive for over an hour, as he knew he could. A splendid storyteller and master schmoozer, the loss of speech was probably the hardest for him to deal with than any of the other symptoms. And how many of us can write our own farewells to those we love? Norm did that, making us laugh and cry at the same time. His final words were not to mourn his death, but rather to celebrate his life. The funeral director told us that in 45 years he had never seen a funeral like it, with so much laughter. That was so much like Norm.

Norm was determined to fight ALS with everything he had. And he did, usually bravely, sometimes not. He chose to go on the respirator and get a feeding tube so that he could live to watch Scott and Shara, our children grow up. But Norm still did not understand how disabled he was. If you got him up and dressed and put him in the van, he was off anywhere you could drag him.

He did more with his life than most healthy people I know did. He continued to be a warm and caring husband, father, and friend to all.

PALS William Loveless’ Story

My name is Bill Loveless, I was diagnosed two years ago with ALS. The direction the disease has taken with my body is the gradual deterioration of the "bulbar muscle," which controls breathing, swallowing, voice, and tongue movement. My neck muscles have weakened to the point that I can't hold my head up and the left side of my body is weaker than my right. With all of this, I still say I am blessed. I can see, hear, taste, and I’m still capable of walking short distances. Most of all I have a loving wife and daughter – and friends that are there to help me!

Before I was diagnosed, I was an active guy at work and at home. I enjoyed the outdoors, doing carpentry work around our home and for others. I always thought I was a strong person. I am six foot seven inches tall and two years ago I weighed 250 pounds. Today I weigh 200 pounds. I guess I never really knew the meaning of strength. Now I do.

PALS Luis Caso’s Story

During 2008, I was diagnosed with juvenile Amyotrophic Lateral Sclerosis (ALS). I had been experiencing difficulty with walking and maintaining my balance. After extensive medical examinations and tests, Parkinson's disease and Charcot Marie Tooth (CMT) were ruled out. Apparently, I've been suffering with this disease all of my life but over the past few years it has taken a turn for the worse. Although at present time I use a cane in order to ambulate, my prognosis is that sometime within the next few years I will most likely end up in a wheelchair. Considering all of the other potential outcomes, it is a blessing that my condition has been somewhat stable (on occasion my ability to swallow and digest food is compromised). For me it is a very curious disease, and I am thankful to God that I am still able to meaningfully function (considering how the disease attacks others in a more insidious manner). I pray that all those who are suffering with this condition will one day be free from the pain of this most serious of experiences.

At Age 42, Ted Had An Awful Lot To Live For
by Laurie Baer, wife of Ted Baer

If your name is Ted Baer, you either develop a sense of humor or learn to fight. Ted chose the former.

At only 42, Ted had a lot of things left to do. Importantly, he wanted to share as much of his time with his daughters, then only 11, 9 and 7.

He was here to see all three girls head off to high school and our eldest start college. Ted was a wonderful man. He cared passionately for his family and friends. ALS couldn’t take that away from him.

This disease is horrible, and everyone will have to fight this struggle in his or her own way. Since his death, we have walked miles in ALS walk-a-thons, raising thousands of dollars for research. A fraternity basketball tournament at our daughter’s college that supports ALS research has named the trophy after him.

We were blessed to have Ted at home for five years. He was able to see the first boyfriends & witness the struggles of teenage girls. Our children are awesome! And Ted is the reason for that.

Do you have a story to share? Send your story to Kim Peters at or visit our website

Calendar of Events

Thursday, July 17th - ALS Awareness Night with The Staten Island
Yankees. Free tickets available. For more info, contact Kristen Cocoman at or (212) 720-3048.

Tuesday, July 22nd - The Long Island Walk to Defeat ALS Kick-Off
Party and Awards Presentation. For more info or to RSVP, contact Sarah Pattison at or (212) 720-3042.

Thursday, July 24th - ALS Awareness Night with The Brooklyn
Cyclones. Free tickets available. For more info, contact Kristen Cocoman at or (212) 720-3048.

Saturday, July 26th - The Hudson Valley Walk to Defeat ALS Kick-Off Party and Awards Presentation. For more info or to RSVP, contact Sarah Pattison at or (212) 720-3042.

July Support Groups

Due to July 4th Holiday, there is no Meeting in July.
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
Next month’s support group meets: August 3rd.

Tuesday, July 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
Topic: The importance of fluids in the summer.
Next month’s support group meets: August 5th.


Tuesday, July 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: August 5th.


Thursday, July 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
Topic: Open Discussion
Next month’s support group meets: August 7th.


Tuesday, July 8th - 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: August 12th.

Tuesday, July 15th - 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: August 19th.


Please note new time and location:
Saturday, July 19th - 1:30 to 3:30
Robert Wood Johnson
Fitness & Wellness Center
Level 2, Community Education Rm
100 Kirkpatrick Street
New Brunswick, NJ
Park in the Fitness & Wellness parking deck.
(3-hour free parking; bring the
parking deck ticket in with you.)
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Topic: Newly diagnosed patients
Next month’s support group meets: August 16th.

Patient group:
Every other Friday from 3 to
4 pm (Throughout the summer.)
Caregivers group:
Currently on a brief hiatus.
If you are interested in joining this
particular group, please contact Sue
Zimmerman, LCSW at (212) 720-3050 or

For general telephone support group
information, call Sue as well.

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.

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: Mounts To Hold Communications Devices

My mother has ALS and uses a communication device. The device has always been on a table in front of her. She is most comfortable in a lounge chair, which she stays in almost all day. Because of weakness in her neck, she has recently been reclining the chair back just a little. But it is now difficult to look at the communication device. Is there something that can hold the device so she can see it?

– Maryann, Rockland County

Positioning is so important to comfort. A slight angle of recline diminishes the effort needed to keep your mother’s head upright. But her field of view (what she can see in front of her) is now looking above the device, instead of horizontally straight ahead.

A mount is the component you will need to look into. Mounts attach to the communication device and can be adjusted for height and angle. There are sturdy mounts that attach to a wheelchair that can hold the heavier communication devices in place. This gives access to the device wherever you go.

If you are in bed or reclining chair, there are rolling mounts that can be wheeled over you, and adjusted so you can view the device at the right angle. Or a small table mount can be placed on an Overbed Table.

Lighter devices like tablets, can be held in place by lightweight, flexible mounts that attach to the side of a bed or chair.

Mounts may be covered by your insurance, so a good first step is to contact your communication device company.

Our loan closet has several rolling mounts and as always, please contact me if you have any questions on this or any other assistive technology topic.

- 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.

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, 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 

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