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


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December 2015

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A Year-end Message From Chapter President & CEO

Dear Friends,

It’s hard to believe that the holiday season is upon us once again. This year, our chapter was able to expand our mission priorities of research, patient services, advocacy and awareness throughout the Greater New York region because of your support.

Thanks to the generosity of people like you, the Greater New York Chapter has been able to accelerate efforts to find the cause and cure of ALS. In addition to the record number of investigator initiated research grants currently funded by The ALS Association, a significant local initiative to understand the genetic basis of ALS is taking place at the New York Genome Center, a world leader in whole genome sequencing. ALSA and our Chapter committed an initial $2.5 million to establish this project, matching a generous leadership grant from the Tow Foundation. In addition, The Milton Safenowitz Postdoctoral Fellowship for ALS Research, founded by the Safenowitz family through our Chapter, awarded six new scientists fellowships to study ALS. This program is designed to encourage and facilitate promising young scientists to enter the field of ALS. To date, our chapter has contributed more than $10 million to exciting research projects and programs that help advance an effective treatment and bring us closer to a cure.

Your participation in raising awareness and supporting our chapter has grown considerably. More than 15,000 people participated in our seven local Walks to Defeat ALS. We also had a record number of Team ALS runners compete in this year’s New York City Marathon.

We are very proud of our Chapter advocates who participated this May in the National ALS Advocacy Conference. Our Chapter’s delegation of almost 50 advocates traveled to Washington, DC to meet with our Members of Congress to continue the urgent fight to develop effective treatments for ALS.

Patient service remains the core of our Chapter’s mission and the need for our services continues to grow. This year, we served more than 770 people living with ALS and their families in our four areas of operations in New York City, Long Island, Westchester County/Lower Hudson Valley, and Northern & Central New Jersey.

Again, thanks to your generosity, we have been able to expand programs, services and staff, particularly in underserved areas. Over 252 patients received 605 pieces of equipment from one of our three loan closets and 1,173 home visits were made to our PALS and their families by our nurses, social workers, and assistive technology specialist.

This year we established a fifth multidisciplinary clinic in our service area at Columbia University Medical Center. We welcomed the Hospital For Special Surgery as our fourth ALS Association Certified Treatment Center of Excellence. And, we continue to provide state-of-the-art multidisciplinary care at our other ALS Association Certified Centers of Excellence at Mount Sinai Beth Israel Medical Center, Rutgers Robert Wood Johnson Medical School, and Stony Brook University Medical Center.

Your continuing support and increasing worldwide interest in ALS has energized the research community and brought a renewed sense of hope to families courageously coping with ALS. We are helping more people and we are funding more research. While there is still no cure for Lou Gehrig’s disease, we are witnessing advances that move us closer to our vision of a world without ALS.

On behalf of the Board and Staff of The ALS Association Greater New York Chapter, I thank you and wish you the Happiest of Holidays and a peaceful New Year.

Sincerely,

Dorine Gordon
President and CEO
The ALS Association Greater New York Chapter


Upcoming Events

Thursday, December 3rd – Sunday, December 6th - Americana Champions for Charity. The ALS Association is participating in the 2015 Americana Champions for Charity shopping event in Manhasset, New York. Click here to register. For more information, contact Kristen Cocoman at Cocoman@als-ny.org.

Friday, December 4th - 2nd Annual Fire & Ice Holiday Gala at the Waldorf Astoria New York. Event includes wine & beer, hors d'oeuvres, DJ, dancing, and a silent auction & raffle. Click here to purchase tickets. For more info email The Young Professionals Group.

December Support Groups

HUDSON VALLEY/FISHKILL, NY
Tuesday, Dec. 1st - 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: Open Discussion/Holiday Celebration
Next support group: Jan. 5th

SUFFOLK COUNTY, NY
Tuesday, Dec. 1st - 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: Open Discussion/Holiday Celebration
For more Info about the Potluck dinner, please contact Cindy Keyser-Posner
Next support group: Jan. 5th

NORTHERN NJ/SADDLE BROOK
Thursday, Dec. 3rd - 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/Holiday Celebration
Next support group: Jan. 7th

NASSAU COUNTY, NY
Sunday, Dec. 6th - 2 to 4 pm
North Shore LIJ - 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/Holiday Celebration
For more Info about the Potluck dinner, please contact Cindy Keyser-Posner.
Next month’s support group will NOT meet due to New Years Day Holiday.

WESTCHESTER, NY/WHITE PLAINS
Tuesday, Dec. 15th - 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/Holiday Celebration
Next support group: Jan. 12th

MANHATTAN, NY
Tuesday, Dec. 15th - 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: Respiratory Care in ALS/Holiday Celebration
Speaker: Keith Llewellyn, RT
Next support group: Jan. 19th

CENTRAL NJ/NEW BRUNSWICK
Saturday, Dec. 19th - 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: Open Discussion/Holiday Celebration
Next support group: Jan. 16th

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.
Contact: Sue Zimmerman, LCSW, (212) 720-3050


Research Conference Updates on Therapeutic Developments

ALS Researchers gathered for a three-day conference at the Banbury Center at Cold Spring Harbor Laboratory in Huntington, New York.

In late September, The ALS Association convened leaders in ALS research for a three-day conference to discuss and collaborate on the most promising therapeutic developments: antisense oligonucleotides, gene therapy, and stem cell therapy. Researchers from across the country turned out for the conference, which was sponsored by The Greater New York Chapter and held at the Banbury Center at Cold Spring Harbor Laboratory in Huntington, New York. The event was a prime opportunity for these researchers to offer updates on their progress, some of which are described below.

Antisense Therapy

Antisense oglionucleotide therapy is believed to offer the best hope for the two major genetically-based forms of ALS, those caused by mutations in the SOD1 gene and in the C9orf72 gene. The goal of this therapy is to destroy these genes’ messenger RNA before it can further the disease process and damage a person’s motor neurons.

At the conference, researchers from the University of Washington in Saint Louis discussed their work testing the efficacy of a form of antisense treatment that targets SOD1 and is delivered by injection into the space surrounding the spinal cord. This method has so far proven safe in people with ALS and researchers are moving forward with plans for a clinical trial. Researchers from the University of California at San Diego also reported that an antisense trial against the C9orf72 mutation is in development and is expected to begin in late 2016.

Gene Therapy

In gene therapy, a gene is introduced into the nervous system that enters cells and is then expressed (that is, churns out RNA working copies) to create a therapeutic substance. One advantage of gene therapy is that the gene is expressed for long periods of time, likely for months but perhaps as long as five years.

Several researchers described their work in developing ALS gene therapy. At Voyager Therapeutics in Cambridge, Massachusetts, a gene that targets SOD1 has been created and is being tested in animal models. Researchers have plans to move this therapy to human trials in the future. Researchers at Ohio State University are also working on a therapy that may slow the progress of spinal muscular atrophy, a motor neuron disease similar to ALS. If supported by further tests, this could provide an important proof of principle for the gene therapy approach.

Stem Cell Therapy

Stem cells are being used in many laboratories today for research into the causes of and treatments for ALS. Researchers at the conference reported that an ongoing trial that sees stem cells implanted into the spinal cord to improve the health of deteriorating motor neurons has so far proved to be safe, with the cells remaining alive. However, this treatment has not led to a measurable change in disease progression.

Additionally, researchers from Cedars-Sinai Hospital in Los Angeles have engineered stem cells to release excess growth factors designed to help motor neurons overcome the toxic effects of the ALS disease process. An initial safety trial of 18 individuals is likely to commence early in 2016.

What’s Next?

"Our purpose in holding these small scientific meetings is to encourage key researchers to engage in a free flow of dialogue that can bring out important ideas, point out weaknesses in approach that need strengthening, and promote collaboration to push the field forward," said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. "Judged by those criteria, the meeting was a terrific success."

"The excitement among our researchers about the progress of therapy for ALS is what drives the field forward," Dr. Bruijn commented. "We saw at this meeting, as we see every day, their commitment to finding the most effective treatments in the shortest possible time frame. We are all encouraged by the advances being made in the field, and know that we must continue to work even harder to move them forward even faster."

For more information on the conference, read The Association’s press release and view the meeting agenda.


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, contact Sarah Pattison at (212) 20-3042 or spattison@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 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 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 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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