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


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March 2015

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Symposium on ALS at
Hospital for Special Surgery

Saturday, March 14 | 8:00 AM - 3:30 PM

A joint Symposium on ALS will be held at the Hospital for Special Surgery with The ALS Association Greater New York Chapter. Hear about scientific updates from researchers and treatment options from clinicians and health care professionals.

For further information or to register to attend please contact Kim Peters at (212) 720-3054 or at kpeters@als-ny.org. Click here for the agenda and more info.

There is no cost to attend this event but registrationis required by Monday, March 9, 2015.


Save The Dates!

The 2015 Walk to Defeat ALS
Season is Almost Here!

New York City, NY -   Saturday, May 2
Long Branch, NJ -   Sunday, May 17
Saddle Brook, NJ -   Sunday, May 31
Westchester, NY -   Sunday, June 14
Somerset, NJ -   Saturday, June 20
Long Island, NY -   Saturday, Sept. 19
Hudson Valley, NY -   Sunday, Oct. 18

www.ALSWalks.org

Registration Now Open!

Upcoming Events

March - See “John Imber's Left Hand” about an artist with ALS at theReelAbilities: NY Disabilities Film Festival. Check www.als-ny.org for dates.

Saturday, 3/14 - Symposium on ALS at Hospital for Special Surgery

Sunday, 3/15 - United Airlines NYC Half-Marathon with Team ALS. Contact Kristen at cocoman@als-ny.org or (212) 720-3048 for info.

Wednesday, 3/18 - Volunteer Night. Help put together Walk material for NYC Canvassing Day. Conatct Ally Davis at (212) 720-3049 or adavis@als-ny.org for info.

Tuesday, 3/24 - The New York City and Westchester Walk to Defeat ALS Kick-Off Reception and Awards Ceremony. For more details, contact Sarah Pattison at spattison@als-ny.org or (212) 720-3042.

Saturday, 3/28 - Canvassing Day. Help us distribute Walk materials in NYC. Contact Ally Davis at (212) 720-3049 or adavis@als-ny.org for info.

Thursday, 3/26 - Book Signing With Matt Nadel, 16-year-old author of “Amazing Aaron to Zero Zippers: An Introduction to Baseball History” at the Bergino Baseball Clubhouse, 67 East 11th Street, NYC at 7pm. Portion ofbook proceeds goes to The ALS Association Greater New York Chapter.

Save the Date - Sunday, May 10 - Tuesday, May 12 - National ALS Advocacy Day and Public Policy Conference. To join our Chapter's delegation in Washington D.C. contact Kim Peters at (212) 720-3054 or at kpeters@als-ny.org


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.

February
Support Groups

NASSAU COUNTY, NY
Sunday, Mar. 1st - 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
Topic: Open discussion
No meeting in April due to Easter & Passover.

SUFFOLK COUNTY, NY
Tuesday, Mar. 3rd - 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
Topic: Open discussion
Next meeting: April 7th.

HUDSON VALLEY/
FISHKILL, NY

Tuesday, Mar. 3rd
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: Allen Feller,
Elder-law Attorney
Next meeting: April 7th.

NORTHERN NJ/
SADDLE BROOK

Thursday, Mar. 5th - 7 to 9 pm
Kessler Institute for Rehabilitation
300 Market Street
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Guest Speaker: Sarah Pattison, ALS Association GNY Chapter
Topic: Walk to Defeat ALS
Next meeting: April 2th.

WESTCHESTER, NY/
WHITE PLAINS

Tues., Mar. 10th - 6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Ave., Bldg 7,
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Guest Speakers: Fran Schaffer from Wellness Home-Care & Sarah Pattison, GNY Chapter will discuss Walk to Defeat ALS
Next meeting: April 14th.

MANHATTAN, NY
Tues., Mar. 17th - 6 to 8 pm
Phillips Ambulatory Care Ctr
(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 meeting: April 21st.

CENTRAL NJ/NEW BRUNSWICK
Saturday, Mar. 21st
1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Ctr., Level 2
Community Education Room
100 Kirkpatrick Street
New Brunswick, NJ
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Topic: Walk to Defeat ALS
Next meeting: April 18th.

TELEPHONE SUPPORT GROUPS

Patient group – Meets weekly every Friday from 2:30 to 3:30 pm – alternates between a “talk” group and “mindfulness based stress reduction exercises” (meditation & guided imagery).

Caregivers group – Every Friday from 4 to 5 pm.

If you are interested in either group (patient or caregivers) please call Sue Zimmerman, LCSW at (212) 720-3050.


Ask Ben: Tech To Control Computers
With Minimal Movement


My husband was diagnosed with ALS one year ago and arm weakness has made it increasingly difficult for him to use the computer. We tried using speech recognition soft ware, but his speech too is not always clear. What are some other ways I can help him use the computer?

- Jane in Yonkers, NY

One method you can try is a head mouse. A slight head movement less than an inch (like nodding yes or no) can wirelessly cause the cursor to travel across the screen. A credit card sized receiver is placed by the computer and sends out an infrared signal. A small silver dot, which you can place on your forehead, or a baseball cap reflects the signal back to the receiver. The movement of the dot on your head moves the cursor on the screen.

The next challenge is the “click.” A switch (button) connected to a receiver can be placed anywhere there is a controlled body movement. For example, it could be a finger just going up or down or even a toe. A slight head movement moves the cursor and a slight finger movement does the “clicking.”

Two companies that utilize this technology are: AbleNet and Origins.

- 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.


Catching Up With Team ALS -
Running For A Cure

Dorothy Halsey Sandberg and Craig Williams.

People who race in marathons, bike tours and triathlons are in a class of their own. They know that it takes training, commitment and dedication to test the limits of personal endurance. Team ALS is the chapter’s program for that select group who are dedicated to furthering the mission of The Greater New York Chapter through various long distance races around the region.

Team ALS began back in 2010 with eight runners in the New York City Marathon who used the chapter’s official charity partner entries to raise money for The ALS Association Greater New York Chapter. Since that time over 100 runners have participated in races with Team ALS. In 2014, Team ALS raised over $230,000. And as Team ALS has grown, the chapter has also added more races.

Along with the UA New York City Half Marathon on March 15th and TCS New York City Marathon on November 1st, this year the chapter has added the TD Five Boro Bike Tour on May 3rd and the Panasonic NYC Triathlon on July 19th to the list of Team ALS official events.

But those aren’t the only endurance races people can take part in to be on Team ALS. Director of Special Events, Kristen Cocoman, says that no matter what type of local race you’re into, you can contribute. Mud Runs and 5Ks are other popular events people have participated in to raise money for ALS. If you join Team ALS you’ll be in good company with like-minded people. “It’s an amazing group that is open to everyone. It’s a great way to meet fellow athletes that have an ALS connection,” said Kristen.

One of those special people is Craig Williams, a 52-year-old marathoner from Mountainside, NJ. Craig took part in that first New York City Marathon in 2010 after he lost his younger brother Paul to ALS in June of that year. (Craig also lost two first cousins to ALS.) Originally from Australia, Craig was looking to build on his passion for running into a way to keep the memory of his brother alive when he returned to the States. He knew about The ALS Association and called the Greater New York Chapter office.

Coincidentally, that was the first year the chapter secured official charity partner positions for the NYC Marathon so he snatched one up. He’s been a dedicated Team ALS member ever since and a motivating force behind the team, encouraging others and taking part in as many of the races as he can, saying that he’s “trying to squeeze in” the triathlon and bike race this year along with both marathons.

Because Lou Gehrig’s Disease runs in his family, Craig feels especially inspired by Team ALS. “Running for a cause just makes it that much more meaningful. It gives extra motivation and is a good way to raise awareness,” he said. When he trains for a race he says he “wears the colors,” meaning he’s usually donning his red Team ALS t-shirt while running.

Craig estimates that he’s run 5,000 miles training for Team ALS races since 2010 and in that time he has raised about $20,000. He credits that success to his outreach and awareness efforts sending emails, posting updates about his training plan to social media and pictures of himself on his runs, wearing his colors of course. This engages his friends and local community making them feel involved during the weeks leading up to a race. “It’s rewarding to know how many good people are out there who want to connect with a cause and support in a way that makes it fun and engaging. They’re along for the ride.”

Marathons are tough. They test the body, the mind and the soul. So what inspires Craig to keep going for Team ALS? “Running in memory of my brother keeps me focused,” he said.

If you want more info about Team ALS please contact Kristen Cocoman at Cocoman@als-ny.org or call (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. 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.

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

Donate

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.

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 social media: Facebook | Twitter | ALS Blog | YouTube | LinkedIn.

Find our Walk to Defeat ALS on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help 


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