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


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April 2016

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A PALS’ Many Gifts

Over the past few years the Andersons have been grateful for the many gifts that have come into their lives following Scott’s diagnosis with ALS.

In 2014 when Scott Anderson was diagnosed with ALS, he and his wife, Kim, began looking for a new home. He was quickly losing the ability to walk and they knew Scott wouldn't be able to go up and down stairs much longer. At the same time, on the other side of town, Diane Schmid was selling her fully accessible home, one that was built for her husband who died of ALS almost 20 years ago.

"When Diane opened the front door to let us in I could not believe how this was unfolding," Kim Anderson said. "In my mind it was not a coincidence." They had found the perfect house for Scott, lots of windows with great views and a Koi pond in front. They closed on the home in June 2015. They were fortunate as well to find a friend in Diane who is able to give them advice about living with ALS and provide emotional support from her experience.

As the Andersons were moving into their new home they decided to join the Greater New York Chapter's Hudson Valley Walk to Defeat ALS. Scott said that he didn't know if anyone would join them, but after putting the word out to their friends and family, they ended up with an incredible turnout of over a hundred people on Team Anderson. “ALS is cruel but we have been given so many gifts as we've gone through this journey," said Kim. "I just think you have to be open to the gifts, they're there, sometimes you just don't see it that way."

Scott said they plan to put together a team for this year's Hudson Valley Walk to Defeat ALS on Sunday, October 16. Last year during the Walk it snowed and ever the optimist Scott is already planning ahead. "I'm getting snow tires for my scooter," he said.

The Chapter’s Walks begin in May! There’s still time to organize a team. Please help to bring hope to people living with ALS, keep the momentum going towards a cure, and come together for a meaningful day.

To join a Walk to Defeat ALS go to www.alswalks.org or contact Linda Berman, Senior Walk Program Manager at (212) 720-3042 or lberman@als-ny.org.



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

The Notre Dame Club of the Mid-Hudson Valley Honors Westchester Walk Team Captains Pat and Jenn Quinn!

Join the Notre Dame Club of the Mid-Hudson Valley on May 25th to honor Ice Bucket Co-Founders Pat and Jenn Quinn for their tremendous efforts to spread awareness and find a cure for ALS.

Contact Kristen Cocoman at Cocoman@als-ny.org for more information.

April Support Groups

NASSAU COUNTY, NY
Sunday, April 3rd - 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: Ask the Doc
Speaker: Matthew Harms, M.D., Asst. Professor of Neurology, Columbia University Medical Center
Next support group: May 1st

LOWER HUDSON VALLEY
Tuesday, April 5th - 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: Practical Tips for PALS from an Occupational Therapist
Speaker: Gioia Ciani, OTR/L, OTD
Next support group: May 3rd

SUFFOLK COUNTY, NY
Tuesday, April 5th - 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: Ask the Doc
Speaker: Matthew Harms, M.D., Asst. Professor of Neurology, Columbia University Medical Center
Next support group: May 3rd

NORTHERN NJ
Thursday, April 7th - 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: National ALS Advocacy Day 2016
Next support group: May 5th

WESTCHESTER, NY
Tuesday, April 12th - 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: Practical Tips for PALS from an Occupational Therapist
Speaker: Gioia Ciani, OTR/L, OTD
Next support group: May 10th

MANHATTAN, NY
Tuesday, April 19th - 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: National ALS Advocacy Day 2016
Next support group: May 17th

CENTRAL NJ
Sat., April 16th - 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: National ALS Advocacy Day 2016
Next support group: May 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.
A new telephone support group has been formed for patients newly diagnosed with ALS. Please call for more info.
Contact: Sue Zimmerman, LCSW, (212) 720-3050


Join Our Chapter Delegation On Capitol Hill!

Register Here | Book Your Hotel | Download Conference Brochure

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


Sign Up For The 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.


Spotlight on Dr. Javier Jara, A 2010 Safenowitz Fellow

The Milton Safenowitz Post-Doctoral Fellowship for ALS Research Award is designed to encourage and facilitate promising young scientists to enter the ALS field. The award program was founded by the Safenowitz family, through the Greater New York Chapter of The ALS Association, and awards are given in memory of Mr. Safenowitz. Fellows work with a senior mentor and receive extensive exposure to the ALS research community through meetings and presentations. More than 90 percent of Milton Safenowitz fellows remain in ALS Research and contribute significantly to the advances made in the field.

Javier Jara, Ph.D., is a Research Assistant Professor in Dr. Hande Ozdinler’s laboratory in the Department of Neurology at the Northwestern University Feinberg School of Medicine in Chicago. He was funded by The ALS Association’s Milton Safenowitz Post-Doctoral Fellowship for ALS Research from 2010-2012 and recently was awarded his own Investigator-Initiated grant by The Association.

The award helped support Dr. Jara research including a project that focuses on how upper motor neurons die in ALS and how to intervene to prevent their death. The results of this project were featured in the January 21, 2016, issue of Gene Therapy. Recently, we sat down with Dr. Jara to learn more about his exciting research project and to get to know the person behind the science.

What has the support from The ALS Association meant to you? Do you have a message for donors who helped make your projects possible?

I want to give a big thank you to the donors for their support and trust. Without their generous contribution, I would not be where I am now. I am extremely grateful!

Do you think the ALS Ice Bucket Challenge has inspired more scientists to investigate ALS?

The ALS Ice Bucket Challenge brought an unprecedented level of awareness to ALS. It brought in more funding so more scientists have the opportunity to join the ALS field. It is very good to bring new expertise and have a fresh insight of how to investigate ALS.

How can we attract more dedicated researchers such as yourself to pursue ALS research?

The ALS Association is doing a great job of this by continuing and expanding the Milton Safenowitz Post-Doctoral Fellowship program. It keeps growing to give more opportunities to more scientists like myself.

To read the full interview with Dr. Jara click here.

Save the Date: The 2016 Safenowitz Fellowship Symposium & Awards Luncheon will be Friday, June 10. Please contact Jeanne Traugot at jtraugot@als-ny.org for more information.


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.

To find out 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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