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


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February 2016

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Long Island PALS Accepted as Research Ambassador at Annual NEALS Conference

As a retired optometrist from Long Island, Frank Verdone has a clear understanding of the science behind clinical trials that may help to find a cure for ALS. As a person living with ALS, the 55-year old former long distance runner has enthusiastically volunteered to be trained as a NEALS Research Ambassador to educate others about the latest ALS clinical trials and inspire PALS to participate in them.

When Theresa Imperato, RN, Nurse Coordinator at the ALSA Certified Center at Stony Brook University Hospital, got an announcement that NEALS was seeking Research Ambassadors, she thought of Frank because of his medical background and interest in current research. "He wants to find a cure if not for himself but also for those diagnosed in the near future," Theresa said. Frank has also participated in ALS studies so he has first-hand experience with clinical research.

As a result, Frank was accepted into the program and attended the 14th Annual NEALS Consortium Conference last November. The ALS Clinical Research Learning Institute, sponsored by the ALS Association’s TREAT ALS initiative, is an intensive two day program dedicated to educating attendees on clinical research and therapy development and empowering them to be advocates for ALS clinical research. ALS Association Chief Scientist Dr. Lucie Bruijn was also in attendance. "We brought this information back to our support groups to explain why clinical trials are so necessary and to try to get patients involved," said Frank, who was one of 34 Research Ambassadors from all over the country including one couple from Canada and one from Puerto Rico. Of those, 15 were PALS who take on the role permanently.

Frank's wife, Mary, accompanied him to the NEALS meeting where she learned how much work is being done in the field, how compassionate the researchers are, and that there is hope for an effective treatment in the near future. Frank noted that meeting other patients and caregivers was a comfort to them; to know that they were not alone in the fight for a cure.

Frank is a dedicated advocate for the Greater New York Chapter and a natural fit as Ambassador because he finds inspiration in educating people about ALS. He often visits local school districts to talk about ALS and the story of Lou Gehrig. "These are life lessons for all children at any age," Frank said. "After our presentation, principals and teachers always comment on how this is the best presentation they have ever heard and students are compelled to run fundraisers for our cause afterwards."

In addition to advocacy work, Frank keeps very busy. He attends the Chapter's monthly support group and ALS clinic at Stony Brook University Hospital. "I find the support groups to be a wealth of information," he said. "And all of the medical providers and staff at the clinic provide us with the best care." Frank serves on the board of Long Island based Ride For Life. He and his family started Team FrankV in his honor to raise awareness and funds for the Long Island Walk to Defeat ALS.

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



2016 Walk Dates

Register at www.alswalks.org
on February 1st!

New York City -   Saturday, May 7
Jersey Shore -   Sunday, May 22
North Jersey -   Sunday, June 5
Westchester, NY -   Sunday, June 26
Long Island -   Saturday, Sept. 17
Central Jersey -   Sunday, Oct. 9
Hudson Valley, NY -   Sunday, Oct. 16

February Support Groups

LOWER HUDSON VALLEY
Tuesday, Feb. 2nd - 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
Next support group: March 1st

SUFFOLK COUNTY, NY
Tuesday, Feb. 2nd - 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
Next support group: March 1st

NORTHERN NJ
Thursday, Feb. 4th - 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
Next support group: March 3rd

NASSAU COUNTY, NY
Sunday, Feb. 7th - 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
Next support group: March 6th

WESTCHESTER, NY
Tuesday, Feb. 9th - 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: March 8th

MANHATTAN, NY
Tuesday, Feb. 16th - 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
Speaker: Tracy Sandy-Ali, BA, CCRC, LPN, Patient Services Manager
Next support group: March 15th

CENTRAL NJ
Sat., Feb. 20th - 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: Tips for Accessing the Computer and Other Assistive Technology Hints
Speaker: Ben Lieman, MSW, Assistive Technology Specialist
Next support group: March 19th

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


Attention New Jersey Residents! For the first time in the state's history, you can now make a donation to the “ALS Association Support Fund" to support the ALS Association Greater New York Chapter's work in New Jersey on your 2015 taxes. Look for the check-off under the nonprofit donation section, where you will have the opportunity to indicate on your New Jersey gross income tax return that you would like a portion of your gross income tax refund or an enclosed contribution be deposited in the ALS Association Support Fund.


The ALS Association Awards Annual Rand Prize
to ALS Expert and Patient Advocate

At its upcoming Leadership Conference in Atlanta, Georgia, on February 4, 2016, The ALS Association will present Dallas Forshew, RN, BSN, with the Lawrence A. Rand Prize, an annual award that recognizes the "courage, passion, integrity and commitment of those serving the ALS community as volunteers, healthcare professionals, educators/communicators or in other ways contributing to the quality of life of people living with ALS."

Forshew’s dedication to the ALS community is clear in the wide range of activities to which she gives her personal and professional time. As an active member of The ALS Association Golden West Chapter, Forshew serves on its care services committee and attends many community outreach events, like the chapter’s Walks to Defeat ALS and Napa Valley Ride to Defeat ALS.

She works tirelessly to advocate and raise awareness of the disease at local, state, and national levels, and has become well-known throughout the ALS community for her knowledge of the disease and its effect on those living with it. Forshew was one of a panel who testified in support of funding an $18 Million research grant from the California Institute for Regenerative Medicine.

The Rand Prize was established by The ALS Association Greater New York Chapter and continued by The Association in honor of Lawrence A. Rand, a founding Trustee and a former National Chairman of the Board of Trustees of The Association. Rand has tirelessly advocated on behalf of people and their families living with ALS. The disease has personally impacted him as it took the lives of his father-in-law, sister-in-law, and wife, Madelon. Past recipients of the Rand Prize include Shonda Schilling, the wife of onetime Boston Red Sox pitcher Curt Schilling; NFL player Pete Duranko; and the internationally renowned neurologist Dr. Richard Olney, who died from ALS in 2012.

Click here to read the full article.


If you're interested in joining us on Advocacy Day, please contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org.


Read About The Latest Research News

New Evidence Supports Nuclear Transport Disruption as a Key ALS Pathway - Researchers from the Max Planck Institute of Biochemistry in Martinsried, Germany demonstrated that protein aggregates, like those found in the neurons of most people with ALS, are toxic when they occur in a cell’s cytoplasm, not its nucleus. The study was published in the Jan. 8, 2016 issue of the journal Science titled, “Cytoplasmic protein aggregates interfere with nucleocytoplasmic transport of protein and RNA.” These cytoplasmic aggregates interrupted transport of materials to and from the nucleus. The findings add to earlier publications highlighting the potential of disrupted nuclear transport as a disease pathway in ALS and may lead to better targeting of therapy. To read the full story click here.

Neuro Collaborative Partner Gladstone Institutes Forms New Collaboration with Biogen In ALS Research - The ALS Association is pleased to announce a new collaboration between the Gladstone Institutes in San Francisco, which is a member of The Association-funded Neuro Collaborative and the biotechnology company Biogen in Cambridge, Mass., to discover novel drug targets for the treatment of amyotrophic lateral sclerosis (ALS). To read the full report click here.

Top Researchers Call for Development of Biomarker Consortium to Speed Development of ALS Treatments - A review supported by The ALS Association titled “ALS Biomarkers for Therapy Development: State of the Field and Future Directions,” authored by leading experts in the field of amyotrophic lateral sclerosis (ALS), was recently published in in the journal Muscle & Nerve. The review provides an overview of the state of the development of biomarkers, which are used to track disease progression, and calls for the formation of an ALS Biomarker Consortium to coordinate efforts among all stakeholders in an effort to speed progress toward finding effective treatments for people living with ALS. Click here to read the full story.

Update on ALS BrainStorm Stem Cell Clinical Trials - JAMA Neurology recently published a paper titled, “Safety and Clinical Effects of Mesenchymal Stem Cells Secreting Neurotrophic Factor Transplantation in Patients With Amyotrophic Lateral Sclerosis – Results of Phase1/2 and 2a Clinical Trials.” This study comes out of a collaboration of researchers from BrainStorm Cell Therapeutics and the Hadassah-Hebrew University Medical Center both located in Israel. The researchers set out to understand the safety and clinical effects of treatment with mesenchymal stem cells induced to secrete neurotrophic factors (MSC-NTF) in patients with ALS. To read the full story click here.


Cookies For A Cure!

On February 12th celebrate YUM Day with Aunt Diane’s Cookies and support The ALS Association Greater New York Chapter. Click here to purchase a selection of amazing cookies and all proceeds will benefit the Chapter.


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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