2012 Walk Program Honored

Every year the National ALS Association hosts the Winter Walk Forum, a conference dedicated to the Association's signature fundraising event - the Walk to Defeat ALS - to allow Walk staff from throughout the country to share best practices and learn about new fundraising techniques.

The staff of the Greater New York Chapter was also proud to represent the nearly 12,000 Walkers and 575 Walk teams in our region, whose hard work and monumental fundraising efforts were honored nationally. The awards that our staff accepted, in which you all share include:

• Highest Walk Event Gross Revenue (Long Island)
• Highest Revenue Percentage Increase in our Market
• Top Family Fundraising Team
• Top Fundraising for One Dollar Difference in a Single Event
• Highest Amount Raised on Facebook
• Teamwork Award for the Highest Team Fundraising Average
• Triumph Award (for outstanding efforts in the face of Hurricane Sandy)
• AND the top award given by the entire Association - Highest Total Chapter Walk Gross Revenue

With this final award mentioned, the Greater New York Chapter became the very first Walk Program in the country to raise $2,000,000! Proceeds fund the Chapter's patient services, research efforts, and advocacy program. This has allowed us to expand services in every area of our region, adding social workers, expanding the transportation program, and adding more clinic days to serve a growing patient population.

This and every single one of these honors could not have been achieved without the late night emails, persistent phone calls, numerous Facebook posts, and torrent of Tweets by each and every one of you, inspired by your personal and heart-felt commitment to helping those living with ALS and to one day find a cure. On behalf of the entire Board & Staff of the Greater New York Chapter, we thank YOU!

Spring Has Sprung!

TThe short-lived hibernation of Winter is most certainly behind us. The Greater New York Chapter is stepping into Spring with a number of events that will kick-off this season of a wakening in the fight against ALS.

3/1- Big Ed's7th Annual Benefit (NewYork,NY): Kick-off March with a great cocktail party fundraiser at Hudson Station in Midtown. Support the fundraising efforts of this dedicated Long Island Walk team. Contact Ally Davis at adavis@als-ny.org or (212) 619-1400 for details.

3/10 PLEASE NOTE DATE CHANGE! Now April 28th - Children & Teen's Event (Long Island, NY): Kids ages 8-18 from Nassau & Suffolk Counties will gather for a day of fun and community at Dave & Buster's, coming together in their common bond of having a close family member with ALS. Please contact Theresa Imperato by March 7th for details and to register at imperato@als-ny.org.

3/7-3/17 - Reel Abilities: The largest film festival dedicated to the portrayal of the lives of those with different disabilities is showing the acclaimed documentary Getting Up, about the life of Tempt One, a Los Angeles graffiti artist with ALS, who continues to create his art aided by technology. Several showings in New York (March 7-12) and New Jersey (March 13-17). Contact Daryl Cochrane at dcochrane@als-ny.org or (212) 619-1400 for details on a special Chapter screening. Visit reelabilities.org.

3/15-3/23 - 33 Variations (White Plains, NY): Moises Kaufman's 33 Variations is being performed at the Fort Hill Players Theater. In 2009, our Chapter provided technical support to Jane Fonda when she made her Broadway debut as a woman with ALS in this gripping play about obsession and relationships. A portion of the ticket sales will benefit The Chapter. Contact Kristen Cocoman for details at cocoman@als-ny.org or (212) 619-1400.

3/7 - NYC Half Marathon (NY, NY): Team ALS Running 4 a Cure will take to the streets for 13.1 miles and raisefunds&awarenessforALS.OurChapterisanOfficial Charity Partner. Join us in cheering on Team ALS at 8 am at the corner of 47th St. & 7th Ave. outside Double Tree Hotel.

3/20 - Walk to Defeat ALS Kick-Off Event for New York City and Westchester Walks (NYC): Once again, NYC will be the first of the Chapter's Walks and the Westchester Walk boasts a new and beautiful site. Contact Walk Program Manager Sarah Pattison at spattison@als-ny.org or (212) 619-1400 for details or to make a reservation.

3/23 - Rockville Centre St. Patrick's Day Parade (Nassau County, NY): The wonderful organizing committee of the parade has named the Chapter a charity beneficiary this year. Bring the family by to celebrate Irish heritage and fight ALS. (rvcstpatrick.com) Erin Go Bragh!

3/23 - Comedy Event (New York, NY): A night of comedy benefiting the Chapter. Renowned comedians celebrate their fellow comedian Bob Smith, who's living with ALS. For details or tickets contact Daryl Cochrane at (212) 619-1400 or dcochrane@als-ny.org.

4/3 - Walk to Defeat ALS Kick-Off Event for New Jersey (Little Falls, NJ): With three Walks taking place this year Long Branch, Saddle Brook, and a new Walk in Somerset 2013 will be an exciting year in the Garden State. Contact the Walk Program Manager Sarah Pattison at spattison@als-ny.org or (212) 619-1400 for details.

March Support Groups

NASSAU COUNTY, NY
Sunday, March 3rd
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN, 
(516) 946-5467 & Jody Wiesel, PhD
(917) 699-9751
Guest Speaker: Carol Grosch, OT, Stony Brook
Topic: Gadgets for making every day easier!

SUFFOLK COUNTY, NY
Tuesday, March 5th 
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
Guest Speaker: Carol Grosch, OT, Stony Brook
Topic: Gadgets for making every day easier!

HUDSON VALLEY, NY
Tuesday, March 5th
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.

SADDLE BROOK / NORTHERN NJ
Thursday, March 7th
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ 
Contact: Debbie Schlossberg, LMSW
(732) 710-8832
Topics: Dorothy - ALS Research perspective of a patient advocate; Daryl - National ALS Advocacy Day.

NEW BRUNSWICK / CENTRAL NJ
Saturday, March 16th
11 am to 1 pm
(Note time change for March only.)
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
Topic: Meet Sarah Chen, M.D., Neurologist at RWJ

MANHATTAN, NY
Tuesday, March 19th
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
Speaker: Ben Lieman, Assistive Technologist
Topic: Items to make it easier for PALS & caregivers.

TELEPHONE SUPPORT GROUPS
Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
(212) 720-3050

For more information about our Support Groups go to the Chapter website: www.als-ny.org, Patient Services section or call (212) 619-1400.

NEW TELEPHONE SUPPORT GROUP:
The Chapter will soon be starting a telephone support group for adult children caregivers of ALS patients. This group has specific issues that can be understood by others "in the same boat" such as working and raising children, as well as caring for a parent with ALS. This support group will meet weekly via telephone for an hour-long conversation, during which adult children caregivers can feel free to share their experiences. If interested please contact Kunbi Oluwasusi, SWI at (212) 720-3045 or koluwasusi@als-ny.org.

With the dawn of Spring upon us, it’s a great time to rejuvenate
and renew your dedication to the fight against ALS.

Please consider a donation to help support research efforts and provide
vitally important services to those affected by this disease.
Contact Loren Domilici at (212) 720-3060 or ldomilici@als-ny.org.
Spring into action today!

FDA Hearing on ALS

On February 25th leaders from The ALS Association, in addition to patients, caregivers, physicians, scientists and other concerned individuals, addressed a panel of representatives from the U.S. Food and Drug Administration (FDA) as the agency conducted its first-ever public hearing specific to amyotrophic lateral sclerosis (ALS). The Association urged the FDA to partner with the ALS community to help expedite the drug development and approval process and bring new treatments to patients as soon as possible.

The day can be summed up in a direct quote from Robert Anderson, a person living with the disease who receives care from The ALS Association’s “Catfish” Hunter Chapter. Using a computer-generated voice on his tablet because he can no longer speak, he told the FDA panel: “ALS is fast. We need FDA to be faster."

To read more on this important hearing, click here to see the ALS Association press release.

I’m living with ALS and I’m unfortunately no longer able to use a regular computer mouse consistently anymore. I’ve heard of a device called a trackball. Could you tell me more about it and how best to use it?

- John D., Westchester, NY

That is a common question when one is no long able to firmly grasp and control a computer mouse, which requires considerable arm or wrist movement to operate. Trackballs certainly replace a great deal of required movements compared to using a mouse. Clasping and dragging of the mouse is no longer necessary. Simply sliding your fingers or palm across the ball will move the cursor on the screen.

As with a mouse, that last movement the click can also be difficult. If clicking is doable for you on a mouse then clicking will be a similar finger movement on a trackball. However the click be made easier. If that click movement is too difficult, there are some trackballs that have a switch port. This allows a switch to be attached to the trackball and placed anywhere a consistent body motion can be controlled. This movement can even be your other hand, a foot, leg, or head movement. By pressing on the switch (where ever it is placed), you can activate the click feature of the trackball.

These switch-adapted trackballs are a little more expense than a standard trackball, but might be the difference between continued computer use and other more involved solutions to computer access.

- Ben

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.

Research News

Unexpected Discovery Could Indicate New Target for ALS Therapy

Researchers funded by The ALS Association have discovered evidence of an unexpected cellular process in some people with amyotrophic lateral sclerosis (ALS). The results should allow researchers to better track the disease in these people and may offer a new target for developing therapy. Read more.

National ALS Registry

It's been over two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.

If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.

For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.

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.

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 ALS Association's Young Professionals Group and upcoming meetings, please click here.

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.

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.

The 2013 ALS Advocacy Day & Public Policy Conference will take place May 8-10 in Washington, DC. Registration begins on Monday, February 11th. We hope to see you at Advocacy Day!

If you're interested in joining our advocacy efforts, please contact Daryl Cochrane at dcochrane@als-ny.org 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: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org 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 ldomilici@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.

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.