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


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September 2015

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There is no cost to attend this event but registration is required by Monday, September 21, 2015. Please RSVP to Kim Peters at kpeters@als-ny.org. If you have any questions please contact Kim at 212-720-3054. For directions to Cold Spring Harbor Laboratory, visit: www.cshl.edu/About-Us/


2015 Walk to Defeat ALS

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

www.ALSWalks.org

Register Today!

Upcoming Events

Monday, September 14th - Sixth Annual Joe Pettinato Golf Classic at Pebble Creek Golf Club in Colts Neck NJ. For info and to register: Kristen Cocoman at Cocoman@als-ny.org or (212) 720-3048.

Saturday and Sunday, September 19th – 20th - Grab your friends and join Team Challenge ALS for the 2015 Vermont Spartan Sprint or Vermont Spartan Beast. For info and to register: Kristen Cocoman at Cocoman@als-ny.org or (212) 720-3048.

Saturday, September 19th - Long Island Walk to Defeat ALS at Eisenhower Park, East Meadow, Long Island. For info: Sarah Pattison at (212) 720-3042 or spattison@als-ny.org.

Saturday, September 19th - MLS Tennis Tournament for ALS at Armonk Tennis Club in Westchester, NY. For info and to register: Kristen Cocoman at Cocoman@als-ny.org or (212) 720-3048.

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

September Support Groups

NASSAU COUNTY, NY
This month’s support group will not meet due to Labor Day Holiday.
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contact: Cindy Keyser-Posner, LMSW(631) 416-2767
Next month’s support group meets: Oct. 4th.

SUFFOLK COUNTY, NY
Tuesday, Sept. 1st - 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: Oct. 6th.

HUDSON VALLEY/FISHKILL, NY
Tuesday, Sept. 1st - 6 to 8 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: Respiratory Issues in ALS
Speaker: Keith Llewelyn, RT from
Millennium Respiratory Services
Next month’s support group meets: Oct. 6th.

NORTHERN NJ/SADDLE BROOK
Thursday, Sept. 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: Ask the Doctor
Speaker: Jerry M. Belsh, MD
Next month’s support group meets: Oct. 1st.

WESTCHESTER, NY/WHITE PLAINS
Tuesday, Sept. 8th- 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: Respiratory Issues in ALS
Speaker: Keith Llewelyn, RT from
Millennium Respiratory Services
Next month’s support group meets: Oct. 6th.

CENTRAL NJ/NEW BRUNSWICK 
Saturday, Sept. 19th - 1 to 3 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: Nutrition and ALS
Speaker: Anna Baratta, RD, MS
Next month’s support group meets: Oct. 17th.

MANHATTAN, NY
This month’s support group will not meet due to Rosh Hashanah.
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
Next month’s support group meets: Oct. 20th.

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


Two New Studies Supported by The ALS Association Highlight Discovery Around Most Common ALS Gene Mutation

Two new studies funded in part by The ALS Association both highlight an important new discovery around the C9orf72 mutation, the most common genetic defect associated with amyotrophic lateral sclerosis (ALS). Both studies emphasize that a key driver of the development of ALS due to this mutation is an export-import imbalance between the cell’s nucleus and its non-nuclear portion, or cytoplasm.

Ke Zhang, Ph.D. and Christopher Donnelly, Ph.D., co- authors of one of the studies described below are both recipients of the Milton Safenowitz Post-Doctoral Fellowships for ALS Research, which encourages and facilitates promising young scientists to enter the ALS field. Funding for this two-year research award is made possible by the generosity of the Safenowitz family through The ALS Association Greater New York Chapter and is in memory of Mr. Safenowitz, who died of ALS in 1998.

"These new studies help us further understand a significant pathway in the ALS disease process and strengthens the evidence that RNA mishandling is a major contributor to ALS even beyond the genetic cases of ALS believed to be caused by the C9orf72 mutation," said Lucie Bruijn, Ph.D., M.B.A., and Chief Scientist for the Association. "Importantly, this discovery may provide us with strong candidates for future drug development," she continued.

In the first study, scientists have discovered that one major consequence of the C9orf72 gene mutation is disruption of RNA export from the cell nucleus. Working in fruit flies carrying various forms of the mutation, the researchers discovered 18 genes that worked to either worsen or mitigate the effects of the mutation. All 18 encoded either components of the nuclear pore or other proteins involved in regulating traffic of RNA and proteins in and out of the cell nucleus. One consequence was an increase in the amount of RNA retained in the nucleus, a change that was also seen in cells derived from people with disease due to the C9orf72 mutation.

The work was performed by first authors Brian Freibaum, Ph.D., of St. Jude’s Children’s Research Hospital in Memphis, Tennessee, and Yubing Lu, Ph.D., of University of Massachusetts Medical Center in Worcester; and led by J. Paul Taylor, M.D., Ph.D., of St. Jude’s, and Fen-Biao Gao, Ph.D. of University of Mass. Dr. Gao was supported by The ALS Association’s Greater Chicago Chapter State of Illinois Grant.

"C9ORF72 mutations are by far the most common genetic defect associated with both ALS and FTD, so understanding how the mutation causes disease is tremendously important for efforts to develop therapies to stop or reverse the death of neurons in the brain and spinal cord of patients," said co-corresponding author Dr. Taylor.

In the second study, researchers at Johns Hopkins University showed that the expanded RNA of the C9orf72 mutation interacts directly with a protein called RanGAP1, which controls traffic of materials across the membrane separating the nucleus from the cytoplasm in all cells, including the motor neurons affected in ALS. That interaction appears to interrupt the normal regulation of cross-membrane flow of materials. The trafficking defect was seen in both a fly model of the disease and in cells from people with ALS. The defect could be mitigated with treatments that targeted the extra RNA produced by the mutation.

The work was performed by co-first authors Ke Zhang, Ph.D. and Christopher Donnelly, Ph.D., and senior authors and Association-supported scientists Rita Sattler, Ph.D., Thomas Lloyd, M.D., Ph.D., and Jeffrey Rothstein, M.D., Ph.D., all of Johns Hopkins University in Baltimore, Maryland. Dr. Ke Zhang-supported by Greater Philadelphia Chapter of The ALS Association.

"These exciting results focus our attention more strongly on the role of cross-membrane trafficking in understanding how the C9orf72 gene causes ALS," according to Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. "The ability of experimental treatments to reverse these effects in this model also gives us more reason to hope that a similar approach may offer benefits in people with ALS. This study and the recent report by a second group also showing defects in nuclear transport provide a stronger basis for developing therapy to target this important pathway."


Long Island Man Takes ALS Ice Bucket Challenge Every Day in August For His Dad

When Brian Poulos was a kid growing up on Long Island the only person he ever heard of who had Lou Gehrig’s Disease was the famous Yankee baseball player himself. “Like everyone else I thought of it as a very rare disease,” Brian said. That was until his own father, Nicholas, a retired school teacher and Vietnam Veteran, started showing symptoms in 2009. His diagnosis of ALS was confirmed at the beginning of last summer, just a month before the ALS Ice Bucket Challenge went viral. Now it seems that everyone in Brian’s social network knows about Lou Gehrig’s Disease or has some connection that he never knew about before.

Brian, a 38-year-old New York State Trooper, and his wife, Amy, Captain of their Walk to Defeat ALS team called “Pa’s PALS,” vowed to do something this year to help raise more money to fight ALS and support the Greater New York Chapter’s research and patient care programs. While watching a presentation at the kick-off event for the Long Island Walk to Defeat ALS this July an idea popped into Brian’s head. He had taken the ALS Ice Bucket Challenge in 2014 like millions of others and he learned from the Chapter’s events staff that it was coming back again. This year he wanted to do something even bigger. He was afraid that his network on social media might miss the banners and posts about joining them in their fight against ALS. To ensure people got the message he decided that he was going to take the ALS Ice Bucket Challenge every day in the month of August. “I wanted to do something to make it tougher to ignore,” he said. “I thought if I do the challenge every day eventually they will click on it and say to themselves, ‘What is this guy up to?’”

Along with Amy, Brian recruited his brother and sister-in-law to help him come up with a plan. They made a list of places Brian could take his ALS Ice Bucket Challenges to increase awareness and create an event-like atmosphere around them. Every one of his challenges is posted on his YouTube channel and shared on Twitter and Facebook. Donations are directed to their Walk Team, “Pa’s PALS” at www.Paspals.com.

Amy helps him set up and film the challenges and he has his nephews follow him to many of the different locations coming along for the ride on his adventure. The effort has picked up steam since his first challenge on August 1st with locations as diverse as the Setauket Fire Department and with the Long Island Ducks mascot "Quacker Jack" on Long Island to the streets of New York City. “I had my 17- and 15-year-old nephews in Times Square at 11pm filming,” he said. “I was the craziest person in Times Square for a little while.” He plans on taking the challenge at a big event at Heritage Park in Mount Sinai, NY and he was approached by News 12 for a story about his effort.

His father Nicholas, who attends the ALSA Certified Center at Stony Brook University Hospital is excited about the project. “He says ‘thank you’ after every one,” Brian said. “And he joins me on as many as he can.” One particular Challenge that Nicholas did with his son was at a Jimmy Buffet concert at Jones Beach where he was also joined by PALS Paul Weisman.

Cindy Keyser-Posner, LMSW, Patient Services Coordinator on Long Island said Nicholas and his wife, Pat, have also come to the Stony Brook Support Group that is held on the first Tuesday of every month. “A very nice family all around and what a terrific thing that their son is taking the challenge every day,” said Cindy.

Since that initial thought, Brian’s idea has taken on a life of its own and people give him suggestions on where to take the Challenge next, even setting them up for him so everything is prepared when he arrives.

The plan worked. So far they have raised almost $7,000 for their Walk to Defeat ALS Team and Brian says he has gotten donations from people on Facebook that he hasn’t seen in years, old high-school friends and people he knows from across the country. “It’s been overwhelming,” he said of his adventure so far. “I’ve met so many people I would never have met. It was something I almost didn’t do. At first, I thought, ‘how am I going to fill up 31 days of this?’ I am happy I did.”

You can watch Brian take the ALS Ice Bucket Challenge everyday in August on his YouTube Channel here and donate to his Long Island Walk to Defeat ALS Team “Pa’s PALS” here. Also, follow Brian on Twitter 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, 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.

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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