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


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August 2015

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The ALS Ice Bucket
Challenge Is Back!

If you took the ALS Ice Bucket Challenge last year then you were a part of a worldwide phenomenon that changed the game when it comes to the search for a cure for ALS. The Challenge was inspired by the Senerchia, Quinn, and Frates families and generated more than $100 million for The ALS Association to fund our key mission priorities of Research, Patient Services, and Advocacy. Amazingly, 17 million videos were posted on Facebook, with 10 billion views and 440 million people engaged as a result of the grassroots campaign. According to Google, more people searched for information about ALS last August than in the entire last decade. It’s time to do it again!

Click here to download and share social media graphics to show your support of the #ALSIceBucketChallenge

The ALS Ice Bucket Challenge is now an annual event to raise awareness and funds to find treatments and a cure for ALS. The challenge will take place this August and every August until there is a cure. We’ve provided a refresher on the ALS Ice Bucket Challenge below.

How do I participate in the ALS Ice Bucket Challenge?

1. ACCEPT - Accept the challenge

2. RECORD - Take a video of yourself dumping a bucket of ice water over your head to increase awareness of ALS

3. UPLOAD - Upload your video to social media, tagging/challenging at least three of your friends

4. GIVE - Make a donation to the ALS Association Greater New York Chapter (als-ny.org) to support research and care services

 

Do I have to donate if I take the challenge?

No, by participating in the ALS Ice Bucket Challenge you’re already raising awareness of the disease. Making a donation, however, will help drive forward the search for treatments and a cure for ALS by funding cutting-edge research and supporting people living with the disease. So by participating and donating you can make a real difference.

Who started the ALS Ice Bucket Challenge?

The ALS Ice Bucket Challenge existed in the sporting world and had been used with other causes in the past. It started with a professional golfer named Chris Kennedy, who challenged his cousin, Jeanette Senerchia from Pelham, NY. Jeanette’s husband Anthony has ALS. Through Facebook, one of her friends was connected to Pat Quinn from Yonkers, NY, who was connected to Pete Frates from Boston. Pat and Pete are also young men battling the disease and their social networks blasted the ALS Ice Bucket Challenge out of the Northeast to places across the country and the globe. Watch co-founders of the ALS Ice Bucket Challenge talk about it here.

When will it start this year?

The founders of the ALS Ice Bucket Challenge kicked things off in a big way at the end of July so that people can include the ALS Ice Bucket Challenge in their summer activities during the entire month of August. It will again be a fun and exciting way for you, your family and friends to get involved in supporting a very worthy cause.

This August and Every August Until There is a Cure! For more information please contact John Nolan at (212) 720-3051 jnolan@als-ny.org or visit our website at www.als-ny.org.


2015 Walk to Defeat ALS

Long Island, NY -   Saturday, Sept. 19
Hudson Valley, NY -   Sunday, Oct. 18

www.ALSWalks.org

Register Today!

Upcoming Events

Saturday, August 1st – Hudson Valley Walk to Defeat ALS Kick Off. Walkway Over the Hudson, Poughkeepsie, NY. Contact Sarah Pattison at (212) 720-3042 or spattison@als-ny.org for info.

Thursday, August 6th – 8th Annual Carl S. Levine ALS Fundraiser from 8-11pm at The World Bar. 845 United Nations Plaza, NYC. For info: Sarah Pattison at (212) 720-3042 or spattison@als-ny.org.

Saturday, August 15th – Joe Berry Memorial Softball Tournament. West Nyack, NY. Contact John Luther at digitdodger@aol.com for more info.

Wednesday, August 19th – Pizza in the Park; LI Canvassing Day. Eisenhower Park, East Meadow, NY. For info: Kristen Cocoman at Cocoman@als-ny.org or (212) 720-3048.

Saturday, August 29th – Hudson Valley Renegades ALS Awareness Night. Dutchess Stadium, Wappingers Falls, NY. Contact Kristen Cocoman at Cocoman@als-ny.org or (212) 720-3048 for info.

SAVE THE DATE: Sunday, September 27th -“Ask the Experts” Research Update. Long Island. Contact Kim Peters at (212) 720-3054 or kpeters@als-ny.org for info.

August Support Groups

NASSAU COUNTY, NY
Sunday, August 2nd - 1 to 3 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contact: Cindy Keyser-Posner, LMSW(631) 416-2767
Topic: Open Discussion
Next month’s support group will not meet due to Labor Day Holiday.

SUFFOLK COUNTY, NY
Tuesday, August 4th - 6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Open Discussion
Next month’s support group meets: Sept. 1st.

HUDSON VALLEY/FISHKILL, NY
Tuesday, August 4th - 6:30 to 8:30 pm
Ambulatory Surgery Center
Building C, 3rd Floor
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic: Open Discussion
Next month’s support group meets: Sept. 1st.

WESTCHESTER, NY/WHITE PLAINS
Tuesday, August 11th- 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: Open Discussion
Next month’s support group meets: Sept. 8th.

NORTHERN NJ/SADDLE BROOK
Thursday, August 13th - 7 to 9 pm
Split Group: PALS & Caregivers willmeet separately from 7-8pm
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 month’s support group meets: Sept. 10th.

MANHATTAN, NY
Tuesday, August 18th - 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 Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: The importance of nutritionfor the ALS patient
Guest Speaker: Eileen Kapeler, RD Nutritionist
Next month’s support group will not meet dueto Rosh Hashanah Sept. 15th.

CENTRAL NJ/NEW BRUNSWICK 
Saturday, Aug. 15th - 1:30 to 3:30 pm
Robert Wood Johnson Fitness & Wellness Ctr.
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: Open Discussion
Next month’s support group meets: Sept. 18th.

TELEPHONE SUPPORT GROUPS
Patient group:
Every Friday from 2:30 to 3:30 pm
Caregivers group:
Every Friday from 4 to 5 pm
Contact: Sue Zimmerman, LCSW
(212) 720-3050.
Topics include: Open discussions or
Meditation and Guided Imagery for
Stress Reduction
*Please Note: On Friday, Aug. 14,
Telephone Support Groups
will not be held.


Insights into Gene Changes in Different Forms of ALS

Research funded by The ALS Association has begun to reveal the wide range of cellular changes brought about by the most common genetic cause of ALS. The research also shows that sporadic (non-familial) ALS is characterized by fewer changes, and in largely different genes, adding to the growing understanding of the cellular basis of ALS and providing insights for pursuit of new treatments.

The study examined changes in transcription, or “reading,” of genes throughout the genome caused by the C9orf72 gene mutation, which accounts for up to 40% of familial ALS and up to 6% of sporadic disease. The study also looked at transcription changes in sporadic ALS not due to any known genes. The researchers found that the C9orf72 mutation caused changes in transcription of hundreds of genes in both the frontal cortex and the cerebellum, two regions affected by the disease. There were fewer changes in sporadic ALS. Relatively few of the affected genes overlapped between the two forms of the disease, pointing out the distinct nature of different types of ALS. In both cases, the changes seen included alterations in the processing of RNA, the “working copy” of a gene, further strengthening the hypothesis that changes in RNA processing are central to the disease process in multiple forms of ALS.

“This important work sheds new light on exactly how the ALS disease process occurs in both an important genetic form and in sporadic disease,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “The specific genes uncovered by this study can now be examined in more detail to determine which of them might point toward an effective therapy to interrupt the disease process.”

The research team was led by Leonard Petrucelli, Ph.D., and Hu Li, Ph.D., of the Mayo Clinic in Jacksonville, Florida. The team included co-first authors Mercedes Prudencio, Ph.D., a former Milton Safenowitz Fellow and the recipient of a new research grant from The Association, and Veronique Belzil, Ph.D., who is a current Milton Safenowitz Fellow. The Milton Safenowitz Postdoctoral Fellowship for ALS Research Award is given to encourage and facilitate promising young scientists to enter the ALS field.

The ALS Association Announces $11.6 Million in New Research Grants to Find Treatments and a Cure for ALS

The ALS Association is pleased to announce its support of 58 new research grants totaling $11,621,638 to find treatments and a cure for amyotrophic lateral sclerosis (ALS).

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

“The global outpouring of support we witnessed during and after the ALS Ice Bucket Challenge has provided The Association with an unprecedented opportunity to advance ALS research on every front,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “These new awards represent some of the most promising research being conducted by the world’s top scientists and it is a great privilege to be able to direct donor dollars to support these incredible efforts.”

The ALS Association makes its research award decisions with the help of a number of Scientific Review Committees made up of individuals with expertise specific to the programs being considered to ensure the feasibility, novelty, relevance to ALS, and scientific merit of each project. The review committees recommend those projects appropriate for funding and final recommendations are approved by The ALS Association Board of Trustees. The Association received over 180 full applications for review.

The research awards announced include investigator-initiated grants, drug development contracts, Milton Safenowitz Postdoctoral Fellowships and support of the NEALS/TREAT ALS™ Clinical Trials Network. Descriptions can be found below and a full list with dollar amounts can be found here.

To read more click here.

A Conversation with Dr. Lucie Bruijn

With the new possibilities generated by additional funding and increased ALS awareness across the United States and around the globe, The ALS Association has an exciting approach to make the most of the notoriety and contributions generated by the Ice Bucket Challenge. In a recent conversation, ALS Association Chief Scientist, Lucie Bruijn, Ph.D., M.A., talked about how The Association plans to capitalize on this good fortune.

Question: Dr. Bruijn, would you please describe how The Association plans to take advantage of this fantastic circumstance?

Dr. Bruijn: Since the 2014 ALS Ice Bucket Challenge, the world is much more aware of ALS, and with increased funding, we have the opportunity to harness the power of greater global collaboration, be a catalyst for continual innovation and encourage novel approaches that can speed better therapies and excellence in care. The ALS Association’s research program is uniquely positioned to take advantage of this unprecedented influx of resources because of our years of developing successful partnerships among academic labs, government agencies, biotech and pharmaceutical companies and the broader ALS community. In addition, we have strong and important relationships with people living with ALS, their families and those who have lost someone to the devastating disease in the past. This has laid a strong foundation for a “virtual” research center, which we have named The ALS Association Research Institute. By bringing all ALS Association translational research programs (TREAT ALS™) together under one umbrella in close collaboration with ALS clinical centers and our Public Policy efforts, we can best expedite advances in ALS research.

To read the full interview click here.




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.

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.


#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.

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.

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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