ALS Association Greater New York Chapter

The ALS Association

September 2013 Monthly Update | The ALS Association Greater New York Chapter  

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September 2013

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Calender of Events

9/9 - 4th Annual Joe Pettinato Golf Classic. Tee Off at Suneagles Golf Club, Eatontown, NJ. For info on foursomes or sponsorships contact Kristen Cocoman at or (212) 619-1400.

9/10 - Young Professionals Group monthly meeting. For more information please contact Loren Domilici at or (212) 720-3060.

9/15 Dining To Donate. Dine out at Applebee's of Paramus, NJ, present this flyer (click here), and 10% of your bill will benefit ALS research and patient care services. Located at 17 East Ridgewood Avenue, Fashion Center Mall Paramus, NJ. Contact Ally Davis at (212) 720-3049 or for more details. Eat. Drink. Fight ALS.

9/16 - 3rd Annual All Fore ALS Charity Golf Outing. Hit the links at Ramsey Golf and Country Club, Ramsey, NJ. For info on foursomes or sponsorships, please contact Kristen Cocoman at or (212) 619-1400.

9/22 - Long Island Walk to Defeat ALS. Join us for the largest ALS Walk in the country - Contact Sarah Pattison at (212) 720-3042 or for details.

9/6-12 Film screening of I Am Breathing. This moving documentary follows a young British man living with ALS and his journey with family and his baby son. At the IFC Center in Manhattan. Visit or for details.

A Look Ahead - 10/20 - Hudson Valley Walk to Defeat ALS

ALS Association Announces
$4.3 million in ALS Research Grants

The ALS Association announced its award of $4.3 million in new research grants supporting 35 new projects for 2013. These awards are part of its Translational Research Advancing Therapy (TREAT ALS™) program, through which The Association funds a diverse portfolio of research to find treatments and a cure for ALS.

Funding is provided for projects in 14 states in the U.S. as well as in Canada, Belgium, the United Kingdom, Italy, Ireland, France and Argentina.

“These awards will drive research on several emerging fronts in the quest to understand and find treatments for ALS,” said Lucie Bruijn, PhD, Chief Scientist for The ALS Association. “The generosity of our donors and supporters makes these grants possible. We are very grateful for that generosity and the opportunity it provides to make these awards for this important research.”

The ALS Association funds both Investigator-Initiated Awards, for research proposed by investigators and Association-Initiated Awards, for research proposals in areas identified by The Association and its scientific advisors as key targets for new research.

Funded through the generosity of Greater New York Chapter Board Member Marilyn Safenowitz, The ALS Association also offers The Milton Safenowitz Postdoctoral Fellowship for ALS Research Award, in memory of her husband Milton Safenowitz, who died of ALS in 1998. These grants are awarded to encourage and facilitate promising young scientists to enter the field of ALS research.

Financial support from a number of organizations and individuals enabled The ALS Association to fund these new research grants, including direct funding from the Greater New York Chapter to the innovative research of Tom Maniatis, PhD of Columbia University. His project focuses on understanding the mechanisms of ALS. The Greater New York Chapter presented Dr. Maniatis with the Jacob K. Javits Lifetime Achievement Award last Fall.

All of these new grants will support research to understand the causes of ALS, to develop new treatments, and to create tools to help to help deliver new therapies. For more on this and all of the projects funded, visit our website and click Research.

The Fall Walk to Defeat
ALS Season is Here!

Hudson Valley Walk to Defeat ALS

The nation's largest ALS Walk is just a few weeks away. Have you registered yet? Please join us on Sept. 22nd at Eisenhower Park in East Meadow, Long Island.

Not to be outdone, the Hudson Valley Walk to Defeat ALS will be held on Oct. 20th, during the peak of the Fall foliage season, at the picturesque Walkway Over the Hudson in Highland, NY.

The Walks are fun family days with live music, great food, and entertainment for the kids! To register, visit

September Support Groups

No Meeting this month due to Labor Day. See everyone at the Walk to Defeat ALS at Eisenhower Park on Sept. 22nd!
Next month's support group meets October 6th.

Tuesday, September 3rd
6 pm to 8 pm
Stony Brook University
Dept. of Neurology 
179 North Belle Meade Rd,
East Setauket
Contact: Theresa Imperato, RN,
(516) 946-5467
Topic: Open Discussion
Next month's support group meets October 1st.

Tuesday, September 3rd
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg 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 October 1st.

Tuesday, September 10
6 pm to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7,
1st Floor Conference Room G-41,
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Guest speaker: Mona Shabazi, ACNP-BC, OCN, MSN, Neurology Nurse Practitioner - Hospital for Special Surgery
Topic: ALS Research Update
Next month's support group meets October 8th.

Saturday, September 12th
7pm to 8:30pm
(Note: Date change.)
Robert Wood Johnson
University Hospital
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: Steve Fasulo, Wilpage Medical
Topic: Power Wheelchairs
Next month's support group meets October 3rd.

September 17th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Guest Speaker: Betsy Thomason, RRT - Respiratory Therapist
Topic: Stress and Breathing
Next month's support group meets October 15th.

Saturday, September 21st
1pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg, Room 108A
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Guest Speaker: Ben Lieman, ATP, MSW; Assistive Technology Specialist - ALSA
Topic: Overview of Assistive Technology
Next month's support group meets October 19th.

For caregivers and patients.
Summer schedule: will be held on a bi-weekly basis:
9/6, 9/20
Friday groups resume weekly, beginning October 4th; details to follow.
Contact: Sue Zimmerman at
(212) 720-3050


If golf is your game then we have plenty for you to do in September! On Monday, September 9th, the 4th Annual Joe Pettinato Golf Classic will be held at Suneagles Golf Club in Eatontown, NJ.

Next up to tee-off is the 3rd Annual All Fore ALS Charity Golf Outing on Monday, September 16th at Ramsey Golf and Country Club in Ramsey, NJ.

For information on foursomes or sponsorships, please contact Kristen Cocoman at or (212) 619-1400.

Employee Giving Made Easy

Are you looking for an easy way to help support the ALS Association Greater New York Chapter? Employee giving could be a great option for you and you can probably do it from your desk! Through an employee giving program, you can dedicate pre-tax money to the Chapter and support the ALS research and the thousands we serve each year. To designate our Chapter, you may use the following codes:

• Combined Federal Campaign (CFC): 56276
• State Employees Federated Appeal (SEFA): 99900019
• Combined Municipal Campaign (CMC): 1741
• United Way: The ALS Association Greater New York Chapter

If you're unsure if your place of work participates in this type of program, please contact Loren Domilici at (212) 720-3060 or for assistance.

September Issue

Every Fall, the fashion world awaits the highly anticipated ‘September Issue’ of Vogue magazine one of the largest publications showcasing the works of some of the most iconic designers in international fashion. The production of this one issue has been the subject of film and countless interviews.

For the ‘September Issue’ of the Chapter’s Monthly Update, we will also take a brief look at fashion and ALS. It can be many things, including an incredible statement of solidarity and awareness, as well as a functional component that can actually assist patients living with ALS and their caregivers in their day-to-day lives.

First, the Chapter’s Assistive Technology Specialist answers questions about clothing for comfort and ease of care, for both ALS patients and their caregivers.

Second, take a look at some of the wonderful Spring fashions we had at the five Walks to Defeat ALS earlier this year.

ask ben logo.jpg

My wife has ALS and she is to the point that she can no longer dress herself. She wears loose fitting clothes to make it easier for me to help her, and take care of her personal needs, however she feels uncomfortable wearing clothes so large. Is there anything I can do or buy to help her that would make her feel more comfortable?

Phil, Rockland County, NY

There are specialty stores that focus exclusively on garments that allow for easier dressing and can also look nice. As with many forms of Assistive Technology, the assistance it provides is not just for the individual with the disability, but also provides assistance for the caregiver. Performing the fine motor skills needed to use buttons, zippers, and laces, makes dressing increasingly difficult for someone with ALS. However there are clothing options available that eliminate the need for such dexterity.

Adapted clothing may open and close from the side or back, whichever more easily allows for personal care without extensive maneuvering. Velcro offers easier opening/closing on shirts, blouses, pants, and dresses. While the fit of adapted clothing may feel the same to a person with ALS, it can make dressing and undressing easier for caregivers, minimizing the need to lift a patient as much, and thereby minimizing the stress to a caregiver’s back. You can search on the internet for adapted clothing, or contact me if you have any questions.

- Ben

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.

Walking in Style

The Greater New York Chapter hosts seven Walks to Defeat ALS throughout the region. Thus far five Walks have taken place New York City; Long Branch, NJ; Saddle Brook, NJ; Bridgewater, NJ; and Westchester, NY. At each Walk one team was awarded as having the “Most Creative T-shirt”. Here are those amazing fashions:

We look forward to the Long Island Walk to Defeat ALS, the largest Walk in the nation, on Sunday, September 22nd and the Hudson Valley Walk to Defeat ALS on Sunday, October 20th. For more details on those Walks, visit

Clearly, fashion in the ALS community has both form and function, as well as style and practicality. We look forward to seeing the great Fall fashions at the Long Island and Hudson Valley Walks!

TEAM ALS Running 4 A Cure

With the Marathon just two months away, Team ALS is kicking it in to high gear with intense training and fundraising. If you would like to learn more about this year's team, please visit our 2013 team page at:

Our Marathon spots are officially sold-out but if you have an entry and would like to join Team ALS for the ING New York City Marathon or at a local race in your area, please contact Kristen Cocoman at: Also, if you can't run in the marathon we will be cheering on the Team from the race route, come rain or shine. Stay tuned for those details.

Food & Culture

The month of September coincides with many cultural events, food celebrations, and religious observances. September marks National Honey Month, National Chicken Month, and National Rice Month. It is also the month of two major Jewish holidays, as well as National Hispanic Heritage Month.

Each of these moments are often celebrated with good food. As a nutritionist for ALS patients, it is critical that foods are not only nutritious and tasty, but also easy to swallow. Here are some easy recipes to commemorate these yummy moments:

National Honey Month Honey, makes me think of the Jewish New Year, Rosh Hashanah. One of the traditions is to dip apples in honey to represent a Sweet New Year. Special food customs and recipes for Rosh Hashanah have developed over many centuries, yet only in recent years have we come to fully appreciate their goodness. For example, while the pomegranate is mentioned many times in the torah, its health benefits of vitamin C, B, Potassium, fiber and antioxidants were only recently discovered. Click here for some traditional Rosh Hashanah recipes modified to make them high in calories and easy to swallow homemade applesauce, pomegranate smoothie, and noodle kugel. Click here for recipies (PDF).

September 15 to October 15 is Hispanic Heritage Month and is dedicated to recognizing the contributions of Hispanics/Latinos in America. One indelible contribution has been to the American palate. Food traditions from South and Central America have become common place on the American dining table. What better way to celebrate National Chicken Month, National Rice Month, and Hispanic Heritage Month, than with Arroz con Pollo (rice with chicken). Check out this recipe courtesy of Also, to wash down this delicacy, enjoy a ‘mock margarita,’ courtesy of Click here for recipies (PDF).

Each recipe can be modified to make it easier to tolerate swallowing by adding extra gravy/sauce for moisture and then blenderizing it to the consistency that is easier to consume. I hope you enjoy these festive foods.

By Ilene Kapelner, Registered Dietician, ALSA Center at Beth Israel Medical Center

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 is September 10th. Meeting will be held at 252 West 37th Street on the 17th floor. Newcomers welcome.

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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