June 2015 Monthly Update | The ALS Association Greater New York Chapter

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June 2015

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Greater New York Chapter Delegation Meets With Legislators on Capitol Hill

Greater New York and Upstate NY Chapter delegations meet with senior US Senator from New York, Charles Schumer.

Over 40 advocates from the Greater New York Chapter, including 6 PALS, joined with other ALS Association chapters from across the country in Washington D.C. this May for the annual National ALS Advocacy Day and Public Policy Conference. Advocates visited with legislators on Capitol Hill to promote continued funding for government supported ALS research programs and garner support for two pieces of legislation. Visits to the offices of legislators included, from New Jersey, Rep. Frank Pallone Jr., Rep. Donald Payne, Jr. and Rep. Leonard Lance, and from New York, Sen. Chuck Schumer, Rep. Peter King, and Rep. Lee Zeldin. Advocates addressed the need for continued support for critical ALS research at the Centers for Disease Control (CDC) and Department of Defense (DOD) along with passing two key pieces of legislation making their way through Congress right now:

• The ALS Registry – Established by Congress in 2008, the ALS Registry at the CDC continues to collect data of ALS cases throughout the country to advance the search for a cause, treatment and cure for ALS. The Registry’s new research notification tool informs PALS about scientists conducting ALS research and clinical trials. The ALS Association is requesting Congress continue funding for the ALS Registry. An additional $10MM is sought for the ALS Registry this coming year.

• ALS Research Program (ALSRP) - Established in 2007 at the DOD the ALSRP is a unique partnership among the public, Congress and the military to promote translational research specifically designed to find new treatments for ALS. Over 8 years, Congress has appropriated more than $54 million for the ALSRP, including $7.5 million in FY15. An additional $10MM is sought for the ALSRP this coming year.

• Dormant Therapies Act - The Dormant Therapies Act would encourage research and accelerate treatment that hold promise for diseases with unmet medical needs like ALS. Rep. Leonard Lance (R-NJ) has championed this legislation in Congress.

• Steve Gleason Act - Advocates also advanced the urgency to pass the Steve Gleason Act that will ensure ALS patients have access to speech generating devices to meet their medical needs through the Centers for Medicare and Medicaid Services, reversing actions taken by the agency that limit patients’ access to these technologies. The Steve Gleason Act has passed in the Senate and is now awaiting a vote in the House of Representatives.

During the conference advocates also had the opportunity to hear from The ALS Association’s Chief Scientist, Dr. Lucie Bruijn, who reported on The Association’s global Research programs and promising developments in clinical trials and ALS research. Click here to view the entire presentation on our website.

National President & CEO, Barb Newhouse recognizes Vinci family at Advocacy Day "Celebration of Excellence Breakfast.

We are encouraged by our accomplishments but we know there is much more to be done. To join the ALS Association’s advocacy efforts, please contact John Nolan at (212) 720-3051 or at jnolan@als-ny.org.

2015 Walk to Defeat ALS

Westchester, NY -   Sunday, June 14
Somerset, NJ -   Saturday, June 20
Long Island, NY -   Saturday, Sept. 19
Hudson Valley, NY -   Sunday, Oct. 18


Registration Now Open!

Upcoming Events

June 10 - ALS Awareness Night with the Rockland Boulders, Tickets or info: Cocoman@als-ny.org.

June 21 - New Amsterdam City Swim. Hudson River Park, NYC. Volunteers needed. Click here for more info..

Support Groups

Tuesday, June 2nd - 6 to 8 pm
Stony Brook University
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Oral Hygiene and
the ALS Patient
Guest Speaker: Kim H. Paticoff-Wolf, D.D.S.
Next support group meets: July 7th.

Tuesday, June 2nd - 6:30 to 8:30 pm
Ambulatory Surgery Center
Bldg. C, 3rd Fl.
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: Open Discussion
Next support group meets: July 7th.

Thursday, June 4th - 7 to 9 pm
Kessler Institute for Rehabilitation
300 Market Street,
Saddle Brook, NJ 07663
Contacts: Debbie Schlossberg, LMSW
(732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: Topic: Legal and Financial Preparation for the ALS Community
Guest Speaker: Shana Siegel, Eldercare Attorney from Wander Polo Siegel Law Firm
Next support group meets: July 2nd..

Sunday, June 7th - 2 to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803 (Downstairs)
Contact: Cindy Keyser-Posner, LMSW,
(631) 416-2767
Topic: Oral Hygiene and
the ALS Patient
Guest Speaker: Kim H. Paticoff-Wolf, D.D.S.
We will not meet next month
due to the July 4th Holiday.

Tuesday, June 9th- 6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue, Building 7
White Plains, NY 10601
Contacts: Helen Mayer, RN
(845) 520-0952
Nancy Brenner, LCSW
(914) 406-3513
Topic: Open Discussion
Next support group meets: July 14th.

Tuesday, June 16th - 6 to 8 pm
Mt. Sinai Beth Israel Hospital
Phillips Ambulatory Care Center
10 Union Square East
(b/w 14th & 15th Sts.)
New York, NY 10003
Neurology Department
5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Guest Speaker: Ben Lieman, ATP
Topic: Topic: Tips for Accessing the Computer and Other Assistive Technology Secrets
Next support group meets: July 21st.

NOTE: June 20 is Somerset Walk to Defeat ALS; No Saturday support group
Robert Wood Johnson Fitness & Wellness Ctr.
100 Kirkpatrick Street
New Brunswick, NJ 08901
Level 2
Community Education Room
Contacts: Debbie Schlossberg, LMSW
(732) 710-8832
Mary Ann Mertz, RN (908) 552-5573
June 29: 7-9 pm
Topic: Split Discussions, see below.
7-8pm: Newly diagnosed PALS and family. If you have been newly diagnosed with ALS, please call Debbie or Mary Ann.
8-9pm: All are welcome!
Next support group meets: July 18th.

Patient group:
Every Friday from 2:30 to 3:30 pm
Caregivers group:
Every Friday from 4 to 5 pm
Contact: Sue Zimmerman, LCSW
(212) 720-3050.
Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction

Making A (Lemonade) Stand Against ALS

Hanna Schiciano selling lomonade to raise money for ALS.

In the children’s book, The Lemonade Wars, two siblings compete over who can make the most money from their lemonade stands in their last week of summer vacation. Inspired by the tale in which the author actually relates the children’s business endeavors to real-world marketing lessons, 10-year-old Hanna Schiciano had an idea. She was going to start her own lemonade stand. When her mother Ondrea asked Hanna what she was going to do with the money, her daughter’s answer was very clear. "Without hesitation, she said 'ALS.' I almost cried."

In 2013, Hanna's grandmother passed away from ALS and she had benefited from the Greater New York Chapter’s services, including equipment lending and attending the ALS Clinic at Hospital for Special Surgery in New York City.

Hanna and her grandmother, Edythe Levitt, had been very close. "My mom can talk a lot and so can Hanna,” said Ondrea. As her grandmother lost the ability to speak they continued to converse by typing everything she wanted to say on augmentative communication equipment. Living near each other in Westchester, NY, the three generations spent every week together. "Hanna was very supportive of her grandmother at the time."

One weekend last summer a determined young Hanna spent her day setting up her stand, flagging down cars and selling lemonade at the bottom of her driveway. “I thought that maybe if I did that and if I kept on working getting people to come to my lemonade stand I could donate it to ALS,” Hanna said. She took on all of the responsibility drawing up her signs, making the lemonade and setting up the stand. “I was just her assistant,” her mom insisted. After two hours of active marketing by waving down cars, she had raised $43. The money will go to the family’s Westchester Walk to Defeat ALS Team "Walking For Edythe."

That Hanna did the whole project herself is something that she feels would make her grandmother happy. "She would be proud that I did it all by myself with no one’s help," said Hanna. All the while her grandmother was never far from her mind. "I was doing it and I thought that I really missed her a lot."

Team "Walking For Edythe" will be at the Westchester Walk to Defeat ALS on June 14th for the third year in a row. And as they return to walk, the lemonade stand will also be back again. "I will do another one," Hanna said.

Research Update: New Study Will
Look At Youth Caregivers

The ALS Association is pleased to announce funding as a part of its Clinical Management Research Program, funding for a new study of young people who care for someone with ALS. The results of the study will be used to better understand the needs of youth caregivers and to design support services to address those needs.

While the proportion of families with a teen or child caring for a person with ALS is unknown, it is clear that many ALS families include youth who may assume caregiver roles. The new study, led by Melinda Kavanaugh, Ph.D., Assistant Professor of Social Welfare at the University of Wisconsin in Milwaukee, will collect data on ALS families nationwide and conduct interviews with youth caregivers to better understand their experiences.

"With no national data on the number of families who rely on young carers in ALS, it is difficult to develop appropriate and targeted support services and programs," Dr. Kavanaugh said. "Thus, identifying why families rely on young carers and assessing their experience will not only provide relevant data for the development of support programs and services, but also lay the groundwork for a longitudinal understanding of how caregiving influences the lives of young carers." A better understanding of these issues will also identify areas for improvement in the quality of life for the family as a whole.

"This important study will help The ALS Association better meet the needs of ALS families," said Kimberly Harding-Maginnis, Chief Care Services Officer. "It is a recognition that the entire family, including its younger members are affected by the disease, and may benefit from the services The ALS Association can offer."

Read the press release.

Ask Ben: Overbed Tables Provide
Easier Access For PALS

My father is living with ALS in Brooklyn, NY. My mother and an aide are his primary caregivers. They have been placing medication and other items for his care on a shelf a few feet away from the bed. Is there anything that is more flexible and can be positioned closer to my father?

- Isaac

You certainly want something to accommodate changing needs throughout the day. Necessary items should be easy to reach, but not in the way of people who might sit or stand close to someone while in bed.

There are various rolling shelf units that have a flat top for essentials, and drawers below for storage. They roll up next to the bed, but not over it. Items on a shelf like this are close to the person in bed, but to the side. This might require the person in bed to maneuver awkwardly to reach the items, or if a caregiver is involved, bringing the items from the tray, to the person in bed.

A rolling overbed table can accomplish both. It is moveable, and can be positioned right in front of someone while in bed. Since it has no storage shelves, an overbed table rolls under the bed (bottom of bed needs to be 4-5" off the ground). The “table” portion is adjustable in height to best respond to the height of the person in bed. Napkins, gauze, meals, medication, water, TV remote, etc. can all be placed on the tabletop, and the entire table can be rolled away when not needed.

Some have a tilting feature with a lip to hold a book or tablet. Rolling overbed tables are covered by some insurances, and can be easily found on-line.

- 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 blieman@als-ny.org 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

The Federal government has taken a major step in the fight against Lou Gehrig's Disease as the Agency for Toxic Substances and Disease Registry (ATSDR) announced the full implementation of the National ALS Registry.

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: www.cdc.gov/als.

For more about the ALS Registry, contact Christine Dunn in the Chapter office at (212) 720-3044 or dunn@als-ny.org. Chris can also help you with your enrollment.

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. Contact Christine Dunn at (212) 720- 3044 or dunn@als-ny.org.

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 alsypg@gmail.com.

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

#Challenge ALS

Help Create A World Without ALS. YOU TOOK THE ALS ICE BUCKET CHALLENGE…Now what? Turn the moment into a movement, and help create a world without ALS by getting involved with The ALS Association Greater New York Chapter. Whether joining the Walk to Defeat ALS®, volunteering your time to support the ALS community, or sharing your story to honor our loved ones and spread awareness, there are plenty of ways to join the fight! Every action you take to Challenge ALS furthers our mission and accelerates finding a treatment and a cure for this devastating disease.


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 John Nolan at (212) 720-3051 or jnolan@als-ny.org.


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 to learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org.


Make a generous donation to find a cure, fund life saving research or to provide much needed equipment and services. To make a donation online, please click here or contact John Nolan at (212) 720-3051 or jnolan@als-ny.org. 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.


Our online Tribute Wall offers individuals and families a way to honor and remember those whose lives have been affected by ALS. Through this online collection of photos, messages, and notes we hope to share the stories of the hundreds of people in our region with Lou Gehrig's disease. If you would like to share a message and a photo, please email your submission of the name of the person and a brief paragraph of no more 200 characters along with a photograph to tribute@als-ny.org.


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.

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