August 2016 Monthly Update | The ALS Association Greater New York Chapter


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August 2016

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Make the impossible happen... again.

This August and every August until there's a cure.

It was the challenge heard across the globe: Ice Bucket Challenge 2014. The problem? One campaign, one August, is just not enough to finish what we started, with the ALS Ice Bucket Challenge: ending Amyotrophic Lateral Sclerosis. This August, The ALS Association is introducing a new campaign called Every Drop Adds Up in an effort to keep the momentum going.

The ALS Ice Bucket Challenge, started organically by three young men living with ALS, resulted in more than $220 million in donations to ALS charities around the world, including $115 million to The ALS Association. Every Drop Adds Up, was inspired by ALS Ice Bucket Challenge co-founder, Pat Quinn’s words, "every August until a cure," and reflects the energy and drive of the ALS community to refocus the nation’s attention on ALS, especially during this time of year.

Since 2014, as a direct result from the ALS Ice Bucket Challenge, the Greater New York Chapter has been able to expand services to the more than 750 PALS in our service area, urge legislators to expand support for ALS, and contributed to important research efforts, including cutting edge ALS research projects at the New York Human Genome Center that seek to understand the genetic basis of ALS. While a tremendous amount of progress has been made, we have more work to do to turn ALS from a fatal disease to a manageable one. It can cost more than $2 billion to bring an effective treatment for ALS to market…that’s 10-20 ice bucket challenges!

What can you do?

One thing we have established is that August is about ALS! If you want to take the ALS Ice Bucket Challenge again this year, we encourage you to do that. But there are also many other things you can do to help spread awareness and raise funds for a cure. Share your story on social media and encourage your friends to donate. Start a Walk to Defeat ALS team or make a donation to an existing team, run or bike with Team ALS on one of our many endurance races, or start your own unique fundraiser locally.

There are many ways to get involved and no matter how big or how small. Every story, every step, every drop adds up! The ALS Ice Bucket Challenge has shown us that when people come together they can make big, impossible things happen. We need to continue that effort, and live by Pat Quinn’s words "every August, until a cure."

To learn more about what you can do to help spread awareness or raise funds this August click here visit our our Every Drop Adds Up webpage.



2016 Fall Walk Dates

Register at www.alswalks.org

Long Island -   Saturday, Sept. 17th
Central Jersey -   Sunday, Oct. 9th
Hudson Valley, NY -   Sunday, Oct. 16th

August Events

8/1 - Somerset Patriots Golf Classic to benefit The Greater New York Chapter. Neshanic Valley, NJ. For more information, email Kristen Cocoman, Director of Special Events & Marketing at cocoman@als-ny.org

8/6 - The Best of Broadway Musical Review – Long Beach, NY. Benefits the ALS Association Greater NY Chapter. | For more information, email Reagan Swaine, Coordinator of Fundraising and Special Events at rswaine@als-ny.org.

8/14 - Hudson Valley Walk Kick-Off – For more information, email Linda Berman, Sr. Walk Program Manager at lberman@als-ny.org.

8/17 - Young Professionals Group Meeting – Greater New York Chapter office, 42 Broadway, Suite 1724, NYC. For more information, email Brett Murphy, Manager of Fundraising and Special Events at bmurphy@als-ny.org.

8/25 - Somerset Patriots ALS Awareness Game Night - TD Bank Ballpark, Bridgewater, NJ. Click here to RSVP. For more information, email Kristen Cocoman, Director of Special Events & Marketing at cocoman@als-ny.org.

August Support Groups

LOWER HUDSON VALLEY
Tuesday, August 2nd, 6-8 pm
Ambulatory Surgery Center
Building C, 1st Floor, Suite 130
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic 1: Tips for Accessing the Computer and Other Assistive Technology Hints
Speaker: Ben Lieman, MSW, ATP,The ALS Greater New York Chapter
Topic 2: Hudson Valley Walk to Defeat ALS
Speaker: Brett Murphy, Manager of Fundraising and Special Events, The ALS Association GNY Chapter
Next support group: Sept. 6th

SUFFOLK COUNTY, NY
Tuesday, August 2nd, 6-8 pm
Stony Brook University,
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: Long Island Walk to Defeat ALS
Speaker: Kristen Cocoman, Director of Special Events & Marketing, The ALS Association GNY Chapter
Next support group: Sept. 6th

NORTHERN NJ
Thursday, August 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: Open Discussion
Next support group: Sept. 1st

NASSAU COUNTY, NY
Sunday, Aug. 7th - 2 to 4 pm

Northwell Health*- Plainview Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: Open Discussion
Next support group: No September meeting due to holiday

WESTCHESTER, NY
Tuesday, August 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: Tips for Accessing the Computer and Other Assistive Technology Hints
Speaker: Ben Lieman, MSW, ATP, The ALS Association GNY Chapter
Next support group: Sept. 13th

MANHATTAN, NY
Tuesday, August 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 Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Helpful hints for understanding and utilizing Medicare and Medicaid benefits
Speaker: Susan Zimmerman, LCSW, The ALS Association Greater New York Chapter
Next support group: Sept. 20th

CENTRAL NJ
Sat., August 20th - 1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Center
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
Topic: Central Jersey Walk to Defeat ALS
Speaker: Brett Murphy, Manager of Fundraising and Special Events, The ALS Association GNY Chapter
Next support group: Sept. 17th

TELEPHONE SUPPORT GROUPS
Patient group:
Every Friday - 2:30 to 3:30 pm
Caregivers group:
Every Friday - 4 to 5 pm
Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction.
A new telephone support group has been formed for patients newly diagnosed with ALS. Please call for more info.
Contact: Sue Zimmerman, LCSW, (212) 720-3050


In The News This Month


Research News: Largest Ever Study of
Inherited ALS Identifies New ALS Gene NEK1

Researchers from Project MinE, a large, international ‘big data’ initiative funded by The ALS Association through ALS Ice Bucket Challenge donations*, shared the exciting news that they have identified a new gene, NEK1, that ranks among the most common genes that contribute to ALS.

It is known that 10 percent of ALS cases are familial, meaning genes are inherited from a family member. The other 90 percent of ALS cases are sporadic, or without a family history. It is very likely that genetics contribute, directly or indirectly, to a much larger percentage of ALS cases. The discovery of NEK1 gives scientists an exciting new target for drug development.

Funding for Project MinE also came through The ALS Association Georgia Chapter, The ALS Association Greater New York Chapter and New Amsterdam City Swim.

Click here to read more about this research news.


Gleason Movie Premieres in NYC

In the photo left to right: Scott Fujita of Team Gleason, NFL player Victor Cruz, NFL player Justin Tuck, attending the NYC Premiere of Gleason.

Honest, raw…those are the words you could hear uttered as you left the Henry Luce Theatre, for the New York premiere of Gleason.

Jenn Tinnelly, Greater New York Chapter Young Professionals Group Patient Services Committee Chair, was one of the guests at the New York City premiere. She lost two uncles to ALS. Tinnelly admits the movie hits close to home and was hard to sit through if you have a close connection to ALS.

"It was tough to watch, but it had to be real and raw to shake people up, take them out of their comfort zones and make them want to step up and get involved," Tinnelly said.

Gleason was an emotional rollercoaster, in every sense of the word. You know going into it watching Steve Gleason go from football hero, to fighting ALS is going to be sad, but what you don’t expect are the brief moments of laughter that can be heard throughout the theatre. The random jokes Gleason makes to lighten the mood, or the silly, goofy comments his wife makes, even at one point staring into the camera and uttering, “I’m still funny,” simultaneously reminding herself and the audience that through it all she retains her sense of humor.

Gleason’s wife, Michel Varisco, takes on much of the movies focus, highlighting her devotion and dedication to her husband. The movie sheds light on what it means to be a caregiver, the sacrifice, the hard work, and the toll it takes on Varisco throughout the progression of Gleason’s disease.

Just ask Rose Joyce, GNY Chapter Young Professionals Group Advocacy Committee Chair, whose aunt died of ALS 13 years ago. Joyce says the impact on caregivers is often overlooked.

"There is a real focus on the role that caregivers play with any ALS diagnosis which is important. In Steve’s case that includes friends, family and even NFL teammates! It also highlights the affect that full time caregiving can have on a person. This movie really shows many of the impacts that ALS has on not only people with ALS, but family and friends," Joyce said.

The movie is largely told through journals that Gleason races to produce for his son Rivers, before he loses his ability to speak. The journals are touching, sad, poignant and sometimes even funny as they chronicle the 4 years following Gleason’s ALS diagnosis. There is no question it’s hard to watch Gleason go from the strong punt blocking New Orleans Super Bowl hero, to wheelchair bound, communicating only through eye tracking technology. However, it’s impossible through it all, to ignore his strong spirit, sense of humor, and the love he has for his family that keeps him fighting.

Gleason's story will now be heard around the country and is expected to pull in a wide audience, raising awareness for ALS.

"Gleason will appeal to a mainstream audience, providing knowledge about ALS to those who may have little understanding about how devastating the disease is. Steve Gleason and his wife Michel were extremely brave to document their story and their struggles to share with America," said Kristen Cocoman, ALS Association, Greater New York Chapter’s Director of Marketing and Special Events, who also attended the film’s premiere said.

Gleason wants his story to be proof, that everyone should keep on fighting, keep on sharing their stories, and one day there will be a cure.

Gleason officially opens to audiences on July 29th. Below is a list of opening dates and where you can find Gleason playing in a theatre near you.

Location

Opening Date

Theatre

NY

July 29th

AMC Lincoln Square

NY

July 30th

Landmark Sunshine

NY/NJ

Aug 5th

Empire, Kips Bay, Jacob Burns, Bam Rose, Chelsea, Kew Gardens, Garden State Paramus

NJ

Aug 12th

Bethal Cinema, Landmark 9, Clairidge 6, Tenafly 4, Regal East Hapton, Manhasset Cinema, Cinema 100 Quad, Bronxville 3


Greater New York Chapter Retains
Charity Navigator 4-Star Rating

The ALS Association Greater New York Chapter has once again received a 4-star rating from Charity Navigator. The ALS Association Greater New York Chapter retained its 4-star rating under a new rating system with an enhanced financial methodology introduced by Charity Navigator in 2016.

We are proud to have achieved this honor as we continue our mission to support people with ALS and their families and to lead the fight to treat and cure ALS.


Sign Up For The 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 a good book to you. 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.

To find out 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, contact Brett Murphy at (212) 720-3052 or bmurphy@als-ny.org. Visit the YPG website here.


Every Drop Adds Up...

Here's how you can make a difference.

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. For more information contact Kristen Cocoman at (212) 720-3048 or email cocoman@als-ny.org.

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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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 movie 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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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.

Tribute

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.

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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