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


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October 2015

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Young Professionals Group’s
Impact Grows in 2015

There are very few areas of The ALS Association Greater New York Chapter’s mission and fundraising efforts that the Young Professional Group (YPG) hasn’t contributed to. Members have pledged to be present at every Walk to Defeat ALS in the region, created a grant program to help more patients and they have organized new fundraising events around New York City to spread the word about ALS and The ALS Association.

YPG Treasurer Annie Cullen, said that she has seen the group develop from the time she joined three years ago. “Since I started I’ve seen a huge transition in what we’ve been able to accomplish and the group has grown tremendously.” Annie joined the YPG when she met them at the Long Island Walk to Defeat ALS in 2012, less than a year after her father was first diagnosed.

Annie started going to the ALSA Support Group in Stony Brook with her father and says the people there were instrumental in helping her family. She joined the YPG and about six months later in May 2013 her father succumbed to the disease. “I went right back that next month to the YPG meeting,” she said. “It was really special that all of a sudden I had a group of peers that had parents, grandparents, other relatives and friends who had ALS. To me that was my connection to my dad."

At the time, the group was hosting a fall fundraiser and quarterly Happy Hours. Members decided they wanted to do much more. They thought about their mission as a group and how they could make the greatest impact on the most people in addition to the donations they were making to ALS research. In December 2014, the group’s Fire & Ice Gala at the Waldorf Astoria raised over $25,000, a substantial increase over the previous year’s fundraiser. That money was put to good use providing grants to the Chapter’s Advocacy and Patient Services departments.

The YPG also has a strong presence in Washington DC at the annual ALS Advocacy Day and have been able to see firsthand how much of an impact ALS patients have on the lawmakers they meet with. This year the YPG created an advocacy grant of $1,500 for a patient to attend Advocacy Day. A patient might need to bring a caregiver and/or medical equipment to make the trip possible, but the cost can be prohibitive for those who really want to attend. PALS Sonal Shah, a tremendous ALS advocate, was the beneficiary of the first grant this spring.

In addition, the YPG created a Patient Service grant of $1,000, donating a head mouse to the Chapter’s equipment loan closet. A head mouse allows a patient who still has movement in their neck, but has lost movement in their hands, to be able to control a Speech Generating Device. According to Assistive Technologist Ben Lieman, there was someone on a waiting list for that very piece of equipment, immediately making the life of a PALS a little bit easier.

The group plans to continue the tradition of donating funds to ALS research at this year’s Lou Gehrig Sports Awards Benefit, covering all three of The ALS Association’s mission priorities: Research, Patient Services and Advocacy.

The YPG still hosts Happy Hours around Manhattan and has recently introduced fitness events into their fundraising efforts. In July, their exercise fundraiser at Mile High Running Club attracted over 20 runners and raised $795. The YPG team also raised $22,644 this year at the New York City Walk to Defeat ALS, while garnering the prize for best t-shirt. Since its inception, the YPG has raised almost $130,000.

Volunteerism is also an important part of the YPG mission. Last year, members of the YPG delivered baskets filled with food and other items to families in the area as part of the Chapter’s Thanksgiving Day Meal Program. "To be able to experience the appreciation of the families, and spend time with them, is really rewarding for us," said YPG President Amanda Levine. "If we can make one day easier for PALS and their families, we have done our job."

Annie says that the work that the YPG does is vital but it also gives her personal satisfaction and the support she needs. "Living through my dad’s illness and being a YPG member while that occurred was special to me," she said. "You just connect. They’re all my friends now." She also says the YPG is looking to continue the momentum it’s gained this year. "We really want to have the most significant impact we can in every area of ALS."

For information about joining the Young Professionals Group, contact Sarah Pattison at (212) 20-3042 or spattison@als-ny.org.


Hudson Valley
Walk to Defeat ALS
Sunday, Oct. 18

www.ALSWalks.org

Register Today!

October Support Groups

NASSAU COUNTY, NY
Sunday, Oct. 4th, 2015 - 2 to 4pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contact:
Theresa Imperato, RN,
(516) 946-5467
Topic: Communication Access in ALS
Speaker: Kathleen McCloskey, SLP
Next support group meets: Nov. 1st

SUFFOLK COUNTY, NY
Tuesday, Oct. 6th – 6 to 8 pm
Stony Brook University
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contact:
Theresa Imperato, RN,
(516) 946-5467
Topic: Communication Access in ALS
Speaker: Kathleen McCloskey, SLP
Next support group meets: Nov. 3rd

HUDSON VALLEY/FISHKILL, NY
Tuesday, Oct. 6th - 6 to 8 pm
Ambulatory Surgery Center
Bldg. 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 support group meets: Nov. 3rd

WESTCHESTER, NY/WHITE PLAINS
Tuesday, Oct. 13th- 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 support group meets: Nov. 10th

MANHATTAN, NY
Tuesday, Oct. 20th - 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 Dept., 5th Floor Conf. Room
Contact:
Jody Wiesel, PhD, (917) 699-9751
Topic: Mindfulness & Meditation for Stress Reduction
Speaker: Sue Zimmerman, LCSW
Next support group meets: Nov. 17th

NORTHERN NJ/SADDLE BROOK
Thursday, Oct. 1st - 7 to 9 pm
Split Group: PALS & Caregivers will
meet 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 support group meets: Nov. 5th

CENTRAL NJ/NEW BRUNSWICK
Saturday, Oct. 17th - 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: Ask the Doc
Speaker: Philip Schiffman, M.D.
Next support group meets: Nov. 21st

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 Updates: Two New Programs To Collect & Study Data and New Genetic Research Paper Published

The ALS Association and Target ALS have announced two new efforts that will further understanding of the disease and help find treatments and a cure for ALS. Additionally, a new study funded by The ALS Association has shown that abnormal protein production, not RNA aggregation, damages neurons in the most common genetic form of ALS.

ALS Association and Target ALS to Expand Tissue Core for ALS Research

A new effort will expand the collection of biofluids from people with ALS, which will complement the post-mortem tissue collection established by Target ALS. Detailed genetic analysis will be performed at The New York Genome Center, all the data will be linked, and all of the samples and data will be made available for researchers around the world. Read more: http://als-ny.org/blog/?p=1258

ALS Association and Target ALS to Bring Whole Genome Sequencing to Postmortem Tissue Analysis

The second effort will perform whole genome sequencing from people who have died from ALS. Funding from The ALS Association and the Tow Foundation will be used by The New York Genome Center to determine the entire genetic sequence of people with ALS who have elected to donate their tissues after death to the Target ALS Postmortem Tissue Core at Barrow Neurological Institute/Saint Joseph’s Hospital in Phoenix, Columbia University in New York, Georgetown University in Washington D.C., Johns Hopkins University in Baltimore and University of California at San Diego. Read more: http://als-ny.org/blog/?p=1260

New Study Points to Protein, not RNA, as Culprit in C9orf72 ALS

Mutation in the C9orf72 gene is the most common genetic cause of ALS, accounting for up to 40% of all familial disease and six percent of sporadic disease. The mutation is an expansion of a six-nucleotide repeat, GGGGCC, from as few as two units in the normal gene to hundreds or even thousands in the mutated form. Production of RNA from the mutation leads to two potentially harmful consequences: accumulation of this RNA in the cell nucleus and production of unusual “dipeptide repeat” proteins. Researchers are actively investigating which of these two consequences may contribute to neuron death in ALS.

In the new study, Helene Tran, Ph.D., and Fen-Biao Gao, Ph.D., both of the University of Massachusetts Medical School in Worcester, and colleagues, showed that abundant accumulation of RNA in the nucleus did not affect neuronal survival. In contrast, damage to neurons from dipeptide repeat proteins was significant, and a temperature-related increase in toxicity was proportional to the increased production of the proteins, not the accumulation of RNA. Based on their results, they suggest that treatments aimed at reducing the effects of the proteins might be therapeutic. Read more: http://als-ny.org/blog/?p=1264


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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