ALS Association Greater New York Chapter

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

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Safenowitz Fellows Present Research at New York Meeting

Current and former Milton Safenowitz Post-Doctoral Fellowship recipients, along with members of the Safenowitz family and ALS Association Greater New York Chapter and National Office.

Eighteen current and former Milton Safenowitz Post-Doctoral Fellows came together recently to discuss their research, form new connections, and further the cause of finding new treatments for ALS. The meeting, held in New York City and hosted by the Greater New York Chapter of The ALS Association, was designed to strengthen the network of young ALS researchers, according to Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A.

“Our ability to make progress in ALS depends so much on attracting the best young scientists into the field,” Dr. Bruijn said. “The Milton Safenowitz Post-Doctoral Fellowship is a critical part of that effort. Almost 90 percent of the Fellows stay in ALS research,” and former Fellows make up a significant fraction of the younger generation of ALS researchers.

The prestigious fellowships are offered every year to selected candidates and provide two years of funding for post-doctoral work in the laboratories of senior scientists. The fellowships are funded through the generosity of the Safenowitz family through the Greater New York Chapter and are in memory of Mr. Safenowitz, who died of ALS in 1998.

“We are very grateful for the leadership and generosity of our Board Member, Marilyn Safenowitz, and proud of the role our chapter has played in helping to establish the first ever Fellowship program for ALS research,” said Dorine Gordon, President & CEO of The Association’s Greater New York Chapter.

During the awards presentation luncheon, which took place midway through the day-long meeting, Alan Levine, Mr. Safenowitz’s son-in-law and Board Member of the Greater New York Chapter, spoke movingly about the commitment of the family to ALS research and their appreciation for the work of the Fellows and The ALS Association in driving that research.

The luncheon keynote speaker was Bryan Traynor, M.D., Ph.D., of the National Institute on Aging, who described the work of multiple international teams in the discovery of the C9orf72 gene, the most common genetic cause of ALS. Dr. Traynor had the rapt attention of the group of scientists as he described the false starts, the unexpected clues, and the ultimate unraveling of the mystery of the gene.

But the major part of the meeting belonged to the Fellows, several of whom commented on the unique value of the meeting for making connections among other beginning ALS researchers. In the words of one, “It was a terrific opportunity to talk at such length with my peers, to meet everyone, to learn about their work, and consider new collaborations.” These kinds of connections go far to further the cooperative spirit that guides ALS research worldwide.

For more information on The ALS Association’s Research Programs, contact Kim Peters at (212) 720-2054 or kpeters@als-ny.org.


Yankee Game Kicks Off Celebration of 75th Anniversary of Lou Gehrig's Speech

On July 2nd, the Yankees kicked-off a league-wide celebration honoring the 75th anniversary of the famous speech given by Lou Gehrig in Yankee stadium when the first baseman retired from baseball after being diagnosed with ALS. The emotional speech has become one of the most iconic and bittersweet moments in sports history.

The event was a part of Major League Baseball's larger effort to "spread awareness and raise research funds for amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease," reported MLB.com in a story about the game.

"Yankee Stadium featured the number '4' down the first- and third-base lines, in honor of Gehrig's number (he is the only Yankee to ever wear it) and the date he gave his speech. The first 18,000 fans in attendance for Wednesday's game received a Gehrig bobblehead, the Yankees wore special patches on their uniforms and a scoreboard video package featuring Derek Jeter and first basemen, like Gehrig, from all 30 teams reciting Gehrig's speech was presented," the article went on to say.

After enjoying the slide show above of pictures we took at the game, click here to read the full article.


Calendar of Events

August 3rd - Team Emmy Lou’s 2nd Annual ALS Benefit hosted by Team Captain Julianne Martin. Event is from 3-7 pm at The New West Brook Tavern. Suggested donation of $25 at the door, raffles, food, and giveaways! Proceeds will support the Greater New York Chapter.

"ALS Awareness Night" with the Hudson Valley Renegades - For more info or to receive complimentary tickets, please contact Kristen Cocoman at cocoman@als-ny.org.

August Support Groups

Please Note: All August Support Groups will discuss the data released from the National ALS Registry.

 NASSAU COUNTY, NY
Sunday, Aug. 3rd - 2 to 4 pm
North Shore LIJ -
Plainview Hospital
888 Old Country Road
Plainview - Downstairs
Contact: Theresa Imperato, RN,
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Guest Speaker: Kristen Cocoman, Director of Marketing & Special Events, GNY Chapter
Topic: Walk to Defeat ALS -
Wear your Team shirts with Pride!
Next month’s support group meets: Sept. 7th.

SUFFOLK COUNTY, NY
Tuesday, Aug. 5th - 6 to 8 pm
Stony Brook University
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN,
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Guest Speaker: Kristen Cocoman, Director of Marketing & Special Events, GNY Chapter
Topic: Walk to Defeat ALS -
Wear your Team shirts with Pride!

Next month’s support group meets: Sept. 2nd.

HUDSON VALLEY/
FISHKILL, NY

Tuesday, Aug. 5th - 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: Indrani Dhar,
Nutritionist, Putnam Hospital
Topic: Nutrition
Next month’s support group meets: Sept. 2nd.

NORTHERN NJ/
SADDLE BROOK

Thursday, Aug. 7th - 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
Next month’s support group meets: Sept. 4th.

WESTCHESTER, NY/
WHITE PLAINS

Tuesday, Aug. 12th - 6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7
1st Floor, Rm G-41
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Guest Speaker: Ben Lieman, MSW, ATP, Assistive Technology Specialist GNY Chapter
Topic: Equipment Loan Program
Next month’s support group meets: August 12th.

CENTRAL NJ/
NEW BRUNSWICK

Please note new time and location:
Saturday, August 16th - 1:30 to 3:30
Robert Wood Johnson
Fitness & Wellness Center
Level 2, Community Education Rm
100 Kirkpatrick Street
New Brunswick, NJ
Park in the Fitness & Wellness parking deck. (3-hour free parking; bring the
parking deck ticket in with you.)
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Topic: Open discussion
Next month’s support group: To be announced.

MANHATTAN, NY
Tuesday, August 19th - 6 to 8 pm
Phillips Ambulatory Care Center
( Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Dept.
5th Floor Conf. Room
Contact: Jody Wiesel, PhD
(917) 699-9751
Topic: Open discussion –
Dealing with ALS
Next month’s support group meets: Sept. 16th.

TELEPHONE SUPPORT GROUPS
Patient group:
Every other Friday from 3 to
4 pm (Throughout the summer.)
Caregivers group:
Currently on a brief hiatus.
If you are interested in joining this
particular 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.


ALS Banner

We’re in the home stretch of our campaign to raise $75,000 for ALS research and every donation makes a difference. 100% of your generous contribution will support The ALS Association Greater New York Chapter’s Research Program and our commitment to discovering effective treatments or a cure to Lou Gehrig’s Disease.

Today, The Association is able to fund only one out of every three proposals it receives, putting innovative ideas and progress on hold due to a lack of resources. With your help, we can change that!

We appreciate all your support during the 75th Anniversary Research Campaign. When you make a gift today, you will be making a difference in the fight against ALS.

The past few months have been truly exciting and it’s thanks to generous donors like you. Together, let's bid farewell to ALS!



Saturday, Sept. 20
Long Island, NY
Sunday, Oct. 19
Hudson Valley, NY

Visit www.ALSWALKS.org to register for a Walk near you this year!

Join us for the Spring Walks in June. For more information or
to find a Walk near you, log on to WWW.ALSWALKS.ORG


Ask Ben: Android Phone Speech Apps


My legs are OK. I can walk, use my hands and arms and I can still use e-mail OK. ALS is primarily affecting my speech for now. I’m aware there are devices covered by insurance, but the small portable lightweight ones I am eligible for now will not be adequate if I can no longer use my fingers. Is there something that’s not an on an iPhone that I can use for communication on my Android phone?

– Charlotte, Brooklyn, NY

Thank you Charlotte for bringing up this question. iPhones and iPads have certainly captured everyone’s attention and there are plenty of text-to-speech options available on the iOS platform. Charlotte raises a good question because there certainly are a lot of people using Android.

The answer is yes. Android, through the Play Store, has a very good speech output program called: Speech Assistant. There are several functions you can adjust from size of buttons to color contrast of buttons. There is a keyboard and an area where you can store often used phrases. There are 12 categories of communications you can edit, add to, or delete. Each category stores up to 100 phrases. It has word prediction, and you can e-mail what you type directly from the app.

This app has a blend of functions that I think you should check out. Oh, and by the way, it’s free.

- 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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