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


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May 2016

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Advocates Tell Their
Stories on Capitol Hill

On Sunday May 8th, advocates from all over the country will descend on Washington, D.C. for three days to speak with lawmakers about the urgent issues facing patients living with Lou Gehrig's Disease during the 2016 National ALS Advocacy Day and Public Policy Conference. The goal is to inform members of Congress about legislation and to seek their support. This year, New Jersey resident Rose Joyce and Christina Raia, from Long Island, NY, will join the delegation from The ALS Association Greater New York Chapter, an annual event they’ve been participating in for over ten years.

Christina Raia (back, left) and Rose Joyce (front, center) attend National ALS Advocacy Day and Public Policy Conference in Washington, D.C.

Rose's Aunt Maggie passed away from ALS in 2003 and at the time she couldn't believe that there was no prospect for a cure available. "My aunt’s love for her sons and her dedication to always help those around her inspires me to advocate in my everyday life," she said.

Christina lost her father to ALS in 2005 after a 6-year battle. She finds it hard to believe that there is no treatment or a cure. "In the world we live in today, that is unacceptable," she said. "That's why I continue to advocate to help change the future of ALS."

Christina said that she and a few of her friends went to Washington, D.C. with the Greater New York Chapter for the first time in 2005. She's gone back almost every year since saying that finding a cure for ALS goes beyond donations. "As we’re meeting with Members of Congress, it's important to show them all aspects of the disease – not only what we need money for, but to put a face to the disease – it’s a powerful story that not many of them may have first-hand experience with," she said.

Coincidentally, the same year that Christina started going to Advocacy Day was also the first time Rose attended. Rose goes by herself but she's never alone. "The bond with my other advocates is unbreakable," she said. "I go to be a voice for my aunt and all the PALS everywhere that need one."

Both Rose and Christina think that the greatest accomplishment achieved through ALS advocacy was The National ALS Registry, a database of information submitted by PALS through a web-portal managed by the Centers for Disease Control and Prevention. The database will help researchers to determine who gets ALS and why. "Seeing the ALS Registry pass was game changing," said Rose. "What a resource for research."

Advocating doesn’t require any specific expertise – anyone can do it! "I don’t think everyone realizes just how simple it is," said Christina. "You just need to share your ALS story – that alone makes such an impact when we’re asking for funding and support of our legislative priorities."

Christina, Rose and other Greater New York Chapter delegates will be sharing their stories on Capitol Hill this month. For more information and to find out about our legislative priorities, please contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org



2016 Walk Dates

Register at www.alswalks.org

New York City -   Saturday, May 7th
Jersey Shore -   Sunday, May 22nd
North Jersey -   Sunday, June 5th
Westchester, NY -   Sunday, June 26th
Long Island -   Saturday, Sept. 17th
Central Jersey -   Sunday, Oct. 9th
Hudson Valley, NY -   Sunday, Oct. 16th

Volunteers Needed!

We are currently in need of volunteers for the New York City, Jersey Shore, North Jersey, and Westchester Walks. Volunteers help out between the hours of 8AM and 1PM. If you have any questions or are interested in volunteering on Walk Day, contact Reagan Swaine at rswaine@als-ny.org.


The Notre Dame Club of the
Mid-Hudson Valley Honors
Westchester Walk Team Captains
Pat and Jenn Quinn!

Join the Notre Dame Club of the Mid-Hudson Valley on May 25th to honor Ice Bucket Co-Founders Pat and Jenn Quinn for their tremendous efforts to spread awareness and find a cure for ALS.

Contact Kristen Cocoman at Cocoman@als-ny.org for more information.


Save the Date

The 2016 Safenowitz Fellowship Symposium & Awards Luncheon will be Friday, June 10. Please contact Jeanne Traugot at jtraugot@als-ny.org for more information.

May Support Groups

NASSAU COUNTY, NY
Sunday, May 1st - 2 to 4 pm
Northwell Health*- Plainview Hospital
*formerly North Shore University Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: ALS Awareness Month:
Advocacy and You/ Open Discussion
Next support group: June 5th

LOWER HUDSON VALLEY
Tuesday, May 3rd - 6 to 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: ALS Awareness Month:
Advocacy and You/ Open Discussion
Next support group: June 7th

SUFFOLK COUNTY, NY
Tuesday, May 3rd - 6 to 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: ALS Awareness Month:
Advocacy and You/ Open Discussion
Next support group: June 7th

NORTHERN NJ
Thursday, May 5th - 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: ALS Awareness Month:
Advocacy and You/ Open Discussion
Next support group: June 2nd

WESTCHESTER, NY
Tuesday, May 10th - 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: Walk to Defeat ALS & ALS Awareness Month
Next support group: June 14th

MANHATTAN, NY
Tuesday, May 17th - 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: ALS Awareness Month:
Advocacy and You/ Open Discussion
Next support group: June 21st

CENTRAL NJ
Sat., May 21st - 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: ALS Awareness Month:
Advocacy and You/ Open Discussion
Next support group: June 18th

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


Latest Research News: Progress in Biomarker Imaging
Study, ALS Therapy Development, and C9orf72 Gene

Innovative ALS Imaging Biomarkers Come Closer to Patients The Neurological Clinical Research Institute (NCRI) imaging team at MGH, led by Dr. Nazem Atassi, used PET imaging to successfully scan the first person living with ALS to measure inflammation in the brain, a promising first step in this imaging biomarker study. The ALS Association together with The ALS Finding A Cure (ALSFAC) Foundation, a program of the Leandro P. Rizzuto Foundation, funded investigators at Massachusetts General Hospital (MGH), Houston Methodist Hospital and GE Healthcare to develop biomarkers that would help with diagnosis of ALS and measuring the progression of the disease. The goal is to develop novel MRI and positron emission tomography (PET) imaging tools.To read the full story click here.

Leaders of iPSC Technology Encourage Cohesive Approach to Speed ALS Therapy Development In a state-of-the-art review, leaders in the field of induced pluripotent stem cell (iPSC) technology to derive motor neurons from people living with ALS, identify advances and challenges in the ability to model ALS with these cells and call for the development and adoption of stringent criteria to enable comparison of results among independent laboratories. The review titled, “Modeling ALS with motor neurons derived from human induced pluripotent stem cells” was published this week in the top-tier journal Nature Neuroscience by a team headed by Clive Svendsen, Ph.D. from Cedars-Sinai Medical Center in Los Angeles, CA.To read the full story click here.

New Disease Mechanism Revealed for C9orf72 Gene Mutations In a new study funded by The ALS Association, Yong-Jie Zhang, Ph.D., Leonard Petrucelli, Ph.D., and their research team from the Mayo Clinic in Jacksonville, Fla. have uncovered a new and potentially important disease mechanism that occurs in the C9orf72 gene, the most common genetic form of ALS. This study was published today in top-tiered scientific journal Nature Neuroscience.To read the full story click here.

New Discovery of Normal Function of ALS Gene Will Aid Drug Development to Slow or Stop Disease Mutations in the C9orf72 gene are known to be the most common genetic cause of ALS. According to new research, C9orf72 is important for immune system function in its normal form, an important discovery made by scientists Jacqueline O’Rourke, Ph.D., and Robert Baloh, M.D., of Cedars-Sinai Medical Center in Los Angeles, that is likely to influence the development of treatments aimed at silencing the C9orf72 mutant gene. The findings were published in the journal Science.To read the full story click here.


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 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.

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.


#Challenge ALS

Help Create A World Without ALS. 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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