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

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200 Members of Congress Sign Speech Generating Device Letter to Centers for Medicare and Medicaid Administrator

In September, local representatives joined in with 200 members of Congress to send a letter to Centers for Medicare and Medicaid Services (CMS) Administrator Marilyn Tavenner asking her to look into several different actions taken by CMS that deny people with ALS timely access to the speech generating devices and eye-gaze equipment that meet their specific medical needs.

These actions fundamentally change long-standing coverage policy and significantly limit what technologies are available to people with ALS. Specifically, CMS has:

  • Prohibited coverage for SGDs that include non-speech technologies such as email, Internet access and environmental controls;
  • Routinely begun to deny coverage for eye tracking; and
  • Implemented a "capped rental" payment system that requires people with ALS to first rent SGDs for a period of 13 months before owning the device. If a person is admitted to hospice, a hospital or a nursing facility during the rental period, Medicare payment for the SGD will cease.

The ALS Association worked with CMS, Members of Congress and other stakeholders for nearly a year to fight these policies. CMS failed to make any changes and people with ALS could be forced to go without the SGDs they need.

The ALS Association urged people to contact Members of Congress to ask that they sign onto the SGD Dear Colleague letter and the outreach has made a huge difference. On September 12th, a letter signed by 200 Senators and Representatives in Congress was sent to CMS Administrator Marilyn Tavenner.

Our goal is to ensure people with ALS have access to the SGDs they need and this letter is a significant step towards accomplishing that goal. It sends a powerful message to CMS that they cannot take these technologies away from people with ALS -- those who need it the most.

The ALS Association applauds every Member of Congress who has joined this fight. We want to especially thank our local representatives who signed the letter including: Sen. Kirsten Gillibrand (D-NY), Rep. Carolyn McCarthy (D-NY), Rep. Leonard Lance (R-NJ), Rep. Peter King (R-NY), Rep. Steve Israel (D-NY), Rep. Yvette Clarke (D-NY), and Rep. Eliot Engel (D-NY).

If your Representative and Senator signed the SGD letter, please take a few minutes to thank them. A sample letter is available on our website. If you do not know the names of your Representative and Senators, you can identify them by entering your zip code on our website here.


The ALS Association Announces Awards For 21 Research Projects In Global Fight Against Lou Gehrig’s Disease

The ALS Association announced commitments toward research projects for scientists in laboratories in nine states in the United States as well as in the U.K., France, Canada, Switzerland, Israel and Australia. These awards, which support 21 new projects, are part of its Translational Research Advancing Therapies for ALS (TREAT ALS™) portfolio, a diverse portfolio of amyotrophic lateral sclerosis (ALS) research to find treatments and a cure for Lou Gehrig’s Disease. These new awards include Investigator-Initiated Awards and The Milton Safenowitz Postdoctoral Fellowship for ALS Research Awards.

These awards are made possible through generous donors and from chapters of The ALS Association, which provide ongoing and substantial support to fund ALS research.

Chapters continually work with certified centers and clinics to provide the best care to people living with ALS.

Investigator-Initiated Awards

Investigators submit a proposed line of inquiry covering diverse areas of research, and The ALS Association convenes a scientific review committee to discuss proposals and make selections based on the merits of each. There are two types of Investigator-Initiated Awards: innovative discovery awards and multi-year awards.

Milton Safenowitz Postdoctoral Fellowships

The Association also offers The Milton Safenowitz Postdoctoral Fellowship for ALS Research Award. Founded by the Safenowitz family through the Greater New York Chapter of The ALS Association and in memory of Mr. Safenowitz, who died of ALS in 1998, these awards are to encourage and facilitate promising young scientists to enter the ALS field.

Grants are awarded in each of the major focus areas that form the basis of the TREAT ALS portfolio.

Scientific Areas of Study

Awards cover a range of scientific study including: the discovery of a gene for ALS; models and mechanisms that are critical for understanding how ALS begins and how it progresses; biomarkers that can be used to diagnose the disease; stem cell-related ALS research; and the ultimate goal of all research funded by The ALS Association, which is to develop therapies to halt the disease.

To read the full article please click here where you can also find all the latest research news and information about the chapter.

October
Support Groups

NORTHERN NJ/SADDLE BROOK
Thursday, Oct. 2nd - 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
No support group meeting in November.

NASSAU COUNTY, NY
Sunday, Oct. 5th - 2 to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview - Downstairs
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
There Will Be Two Guest
Speakers at This meeting:

Speaker 1: Ben Lieman, ATP,Greater NY Chapter
Topic 1: Assistive Technology. What’s Available? Q&A
Speaker 2: Jeffrey Abrandt, Esq., of Goldfarb Abrandt Salzman & Kutzin
Topic 2: Community Medicaid: Recent Eligibility Changes and Managed Long Term Care
Next month’s support group meets: November 2nd.

SUFFOLK COUNTY, NY
Tuesday, Oct. 7th - 6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
There Will Be Two Guest
Speakers At This meeting:

Speaker 1: Ben Lieman, ATP,Greater NY Chapter
Topic 1: Assistive Technology. What’s Available? Q&A
Speaker 2: Deanna Eble, Esq.,
of Vincent J. Russo & Associates
Topic 2: Community Medicaid: Recent Eligibility Changes and Managed Long Term Care
Next month’s support group meets: November 11th

HUDSON VALLEY/FISHKILL, NY
Tuesday, Oct. 7th - 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
Guest Speaker: Betsy Thomason, BA, RRT Respiratory Therapist, Mt. Sinai/Beth Israel
Next month’s support group meets: November 4th

WESTCHESTER, NY/
WHITE PLAINS

Tuesday, Oct. 14th - 6 to 8 pm
Burke Rehabilitation Center785 Mamaroneck Avenue
Building 7 (Patient Dining Room)
White Plains, NY
Contact: Helen Mayer, RN
(845) 520-0952
Guest Facilitator: Tracy Sandi-Ali, Intake & Support Program Manager, Greater New York Chapter
Topic: Open Discussion
Next month’s support group meets: November 11th

CENTRAL NJ/NEW BRUNSWICK
Please note new time and location.
Sat., Oct. 18th - 1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Center
Level 2, Community Education Rm
100 Kirkpatrick Street
New Brunswick, NJ
Park in the Fitness & Wellness parking deck.
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Topic: Wheelchair Accessible Vehicles
Guest Speaker: Brunswick Mobility
Next month’s support group: November 15th.

MANHATTAN, NY
Tuesday, Oct. 21st - 6 to 8 pm
Phillips Ambulatory Care Center
(Mt. Sinai Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Department
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open Discussion
Next month’s support group meets: November 18th

TELEPHONE SUPPORT GROUPS

Patient group: Every other Friday from 3 to 4 pm (Weekly groups will resume in the late fall.)

Caregiver group: Will resume in fall. If you are interested in joining this group, please contact Sue Zimmerman, LCSW at (212) 720-3050 or Zimmerman@als-ny.org.

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


Last Walk of 2014 on Sunday, Oct. 19 in Hudson Valley, NY

Click here to register for the Hudson Valley Walk!

For more information or to find a Walk near you, log on to WWW.ALSWALKS.ORG


Ask Ben: Switching to a Switch
When Using a Computer


ALS is affecting my arms and I am finding it more difficult to get on the computer. I'm so used to doing everything with my computer but now I find I have to think about it. I can still use the keyboard and mouse. Is there anything that would make it easier?

– Bill, Nassau County, NY

Switch to a switch. The operation of a mouse by hand is really an intricate process. First we clasp the mouse, then we slide it left/right or further/closer to move the cursor, and then we click. All designed to tell the computer that wherever the cursor is that's what you want to activate. There's a lot going on with the hand and all revolving around one object: a mouse.

There are track balls and joysticks to replace the mouse and more easily move the cursor around the screen. But I want to focus on the click, that small finger movement. The difficulty is that with a mouse or trackball, the 'click' apparatus is in the same component. As dexterity diminishes you want to separate those functions.

There are simple USB attachments that allow 'clicking' with a switch. A switch is just a button (they come in various sizes.) You still move the cursor with the mouse or trackball, but the 'clicking' part can now be done by a separate switch. Since the switch is operating independent of the mouse, you can place it under your other hand, behind your head, in your lap. Anywhere you have comfortable consistent movement.

Here are two items to consider. Let me know if you have any other questions about access to computers:

- 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.


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 dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@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.

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 www.als-ny.org/espanol.


MAKE A DIFFERENCE

Advocate

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 kpeters@als-ny.org.

Volunteer

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: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.

Donate

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 kpeters@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.

Connect

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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