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


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March 2016

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New Jersey Students Will Challenge ALS Throughout Their High School Career

Students have always been a significant part of the fight against ALS. That's why The ALS Association Greater New York Chapter launched Students Challenge ALS, a school-based program that provides students with the tools they need to become advocates for the ALS community. One freshmen class at Pascack Valley High School in Hillsdale, NJ embodies that mission and is working to bring hope to PALS and their families.

There is a tradition at Pascack Valley High School that each class picks a cause and follows it through their entire four-year career at the school. This year, the freshmen class decided to use their time to educate fellow classmates about Lou Gehrig's Disease and raise money for the cause. The student council spearheads the campaign by enlisting help from more than 300 classmates to teach the rest of their school about ALS while also raising money for our Chapter.

Class advisor Marisa Mathias says that it's a part of the school’s culture to have students get involved. They promote the cause at pep rallies and other school-wide events. In April, the students will also record and present a PSA to inform the student body about Lou Gehrig's Disease.

The students chose ALS because Class President Sofia Urbaniak's father was diagnosed with ALS when she was in elementary school. This brought a very personal connection to their cause to make a difference. "It definitely feels rewarding to know that we are fighting not, only for the whole ALS community, but also for one individual person," Sofia said. "We have the opportunity to try and find a cure and through our fundraising and awareness we can get one-step closer."

The class is well underway in supporting their cause - they have already started fundraising. They have sold more than 200 t-shirts, of their own design, to classmates and are hosting a morning coffee and donut sale at the school. Recently, the students formed a fundraising team called "PV Class of 2019" for the 2016 North Jersey Walk to Defeat ALS in Saddle Brook, NJ happening on Sunday, June 5th.

"We are all extremely excited to participate in the Walk to Defeat ALS," said Sofia. "We plan to fundraise before and be there on Walk day with our tie-dye blue t-shirts!"

To learn more about Students Challenge ALS please contact Reagan Swaine, Coordinator of Fundraising & Special Events at (212) 720-3043 or rswaine@als-ny.org. We challenge you to further our efforts by starting your own fundraising and awareness campaign today!

To follow the Pascack Valley High School Class of 2019 find them on Twitter at @pvclassof2019.



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

March Support Groups

LOWER HUDSON VALLEY
Tuesday, March 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: Ask the Doc
Speaker: Marinella Galea, M.D.,
Director, Spinal Injury Services,
VA Medical Center
Next support group: April 5th

SUFFOLK COUNTY, NY
Tuesday, March 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: All About Choices
Speaker: Diane De Luca-Patwell, Manager, Referrals, Hospice Care Network
Next support group: April 5th

NORTHERN NJ
Thursday, March 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: Tips for accessing the Computer and other Assistive Technology Hints
Speaker: Ben Lieman, MSW, ATP, Assistive Technology Specialist, GNY Chapter
Next support group: April 7th

NASSAU COUNTY, NY
Sunday, March 6th - 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: All About Choices
Speaker: Diane De Luca-Patwell, Manager, Referrals, Hospice Care Network
Next support group: April 3rd

WESTCHESTER, NY
Tuesday, March 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: Ask the Doc
Speaker: Marinella Galea, M.D., Director, Spinal Injury Services, VA Medical Center
Next support group: April 12th

MANHATTAN, NY
Tuesday, March 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: Research Updates for the ALS
Community
Topic: Tips for Accessing the Computer and Other Assistive Technology Hints
Speaker: Ben Lieman, MSW, ATP, Assistive Technology Specialist, GNY Chapter
Next support group: April 19th

CENTRAL NJ
Sat., March 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
Next support group: April 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


Registration is open Please join us!

Register Here | Book Your Hotel | Download Conference Brochure

For more information about joining us on Advocacy Day, please contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org.


New Grants and Challenges to Further ALS Research

$1MM Investment to Launch Grand Challenge to Develop a TDP42 Biomarker The ALS Association, in partnership with ALS Finding a Cure, recently announced the Grand Challenge to generate a biomarker to track TDP43 aggregation. The successful team(s) with the most developed plan will receive up to a $1 million investment. Transactive response DNA-binding protein 43 (TDP43) is the primary protein aggregate (i.e. clumps of protein) found in the brain and spinal cord of people with ALS and in other neurodegenerative diseases such as frontotemporal dementia (FTD) and Alzheimer’s disease (AD), among others. Mutations in TDP43 are also a genetic cause of ALS. The Grand Challenge will lay the groundwork to develop a positron emission tomography (PET) tracer specific for TDP43 aggregates to use as an ALS biomarker. Once developed, its use would be widespread from tracking TDP43 aggregation during the disease process to enhancing ALS clinical trials targeting TDP43. To read the full story click here.

The ALS Association Funds Five Grants in Clinical Care Management and Data Collection - The ALS Association announced its support for four new clinical management grants that will address the gaps in amyotrophic lateral sclerosis (ALS) clinical care whose funding collectively totals to $655,855 and one new ALS Association-Initiated grant awardee whose project is to streamline data collection at ALS clinics for funding of $100,000. To read the full report click here.

The ALS Association Invests up to $2.5 Million for New Proposals to the TREAT ALS™ Drug Development Contract Grant Program - The ALS Association announced the Translational Research Advancing Therapy for ALS (TREAT ALS™) Drug Development Contract grant program to fund milestone-driven research to develop new treatments for ALS. This program supports research from early target identification to preclinical research and early pilot clinical trials. The successful grants with the most developed plan will receive up to a $500,000 investment over a maximum two-year period. To read the full report click here.


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 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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