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


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May 2015

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May is ALS Awaress Month
You Can Get Involved!

ALS Awareness Month is commemorated each May with events, media coverage and other activities to bring attention to a disease that continues to impact so many lives.

Hard as it is to believe, it’s been eight months since the ALS Ice Bucket Challenge brought unprecedented awareness to Lou Gehrig’s Disease. We are forever grateful for each and every person who joined our cause last summer and for the loyal supporters who have been with us for years. Because of you, our ALS community has renewed determination and hope in the fight against this disease.

ALS Awareness Month is a great time to help keep the momentum moving forward. Here are a few ways you can make a difference:

• Tell your story. One of the best ways to raise awareness is to join our social networks and make your ALS story known. Use Facebook, Twitter, Instagram and Pintrest to tell people about ALS and how it has impacted you and your family.

• Kick off the month by registering for our Walks to Defeat ALS. For a full list of Walk dates see the other side of this newsletter. If you’re interested in participating, sign up at www.alswalks.org or contact Sarah Pattison at (212) 720-3042 or spattison@als-ny.org.

• Join our Young Professionals Group (YPG). The YPG works in partnership with the Greater New York Chapter to find a cure for ALS and to improve the lives of people and families living with the disease. For more info contact Alexandra Davis at (212) 720-3049 or adavis@als-ny.org.

• Become an ALS Advocate and help change the laws and policies that affect thousands of persons with ALS and their families. If you’re interested in becoming an ALS Advocate contact John Nolan at (212) 720-3051 or jnolan@als-ny.org.

• Create your own event to benefit your local chapter. Whether you host a bake sale or run a marathon, every dollar you raise can make a difference in the fight against ALS. For more info contact Alexandra Davis at (212) 720-3049 or adavis@als-ny.org.

• Honor your loved one with a tribute or memorial gift. For more info contact John Nolan at (212)720-3051 or jnolan@als-ny.org.

The ALS Association Greater New York Chapter’s website has information about these and other ALS Awareness Month activities, as well as news about research and services.


Save The Dates!

The 2015 Walk to Defeat ALS
Season is Almost Here!

New York City, NY -   Saturday, May 2
Long Branch, NJ -   Sunday, May 17
Saddle Brook, NJ -   Sunday, May 31
Westchester, NY -   Sunday, June 14
Somerset, NJ -   Saturday, June 20
Long Island, NY -   Saturday, Sept. 19
Hudson Valley, NY -   Sunday, Oct. 18

www.ALSWalks.org

Registration Now Open!

Upcoming Events

May 3 - Cheer for Team ALS in TD Five Boro Bike Tour. For more information, contact Kristen Cocoman at cocoman@als-ny.org.

May 14 - Flo’s Team Fights ALS at The Royal in Union Square, 127 4th Ave, NYC from 7 – 10 pm. Info: Adam Fromowitz at adamfromowitz@gmail.com.

May 14 - Flint Sprint 5k in Eisenhower Park.Register: www.flintsprint5k.com For more information, contact Kristen Cocoman at Cocoman@als-ny.org.

May 19 - 2015 Long Island Board of Realtors Nassau South Shore Chapter Fundraiser to Benefit The ALS Association Greater New York Chapter. Bridgeview Yacht Club, Island Park. For information, contact Kristen Cocoman at Cocoman@als-ny.org.

May 29 - ALS Awareness Night with the Somerset Patriots at TD Ballpark in Bridgewater, NJ. Tickets or info: Cocoman@als-ny.org

May 30 – Annual Coleman Petry Swing for ALS at Spring Rock Golf Center in New Hyde Park, NY. To purchase tickets go to www.swingforals.weebly.com. For questions, contact Reagan Swaine at rswaine@als-ny.org.

May 29-31 - "A Moment in Time," a play about how a mother and her family deal with ALS. Performed at American Theatre of Actors, 314 West 54th Street, NYC. Portion of proceeds goes to the Greater New York Chapter. Info: jmilstein13@aol.com.

May
Support Groups

NASSAU COUNTY, NY
Sunday, May 3rd - 2 to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803 (Downstairs)
Contacts: Theresa Imperato, RN,
(516) 946-5467
Cindy Keyser-Posner, LMSW,
(631) 416-2767
Topic: Respiratory Discussion of Diaphragmatic Pacing System
Guest Speaker: Dana Telem, M.D.
Next month’s support group: June 7th.

SUFFOLK COUNTY, NY
Tuesday, May 5th - 6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Rd.,
East Setauket, NY 11733
Contacts: Theresa Imperato, RN,
(516) 946-5467
Cindy Keyser-Posner, LMSW,
(631) 416-2767
Topic: Respiratory Discussion of Diaphragmatic Pacing System
Guest Speaker: Andre Osborne, RT
Next month’s support group: June 2nd.

HUDSON VALLEY/FISHKILL, NY
Tuesday, May 5th - 6:30 to 8:30 pm
Ambulatory Surgery Center,
Bldg C, 3rd Floor
200 Westage Business Ctr,
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW
(914) 406-3513
Topic: Music therapy for Stress Reduction in ALS
Guest Speaker: Connie Marie Rao, Teacher and Music Specialist, NY Dept. of Education
Next month’s support group: June 2nd.

NORTHERN NJ/SADDLE BROOK
Thursday, May 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: Open discussion
Next month’s support group: June 4th.

WESTCHESTER, NY/WHITE PLAINS
Tuesday, May 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: Music therapy for Stress Reduction in ALS
Guest Speaker: Connie Marie Rao, Music Specialist
Next month’s support group: June 9th.

CENTRAL NJ/NEW BRUNSWICK
Saturday, May 16th - 1:30 to 3:30 pm
Robert Wood Johnson Fitness & Wellness Ctr.
100 Kirkpatrick St.,
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 month’s support group: June 29th.

MANHATTAN, NY
Tuesday, May 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 Dept., 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Medicare/Medicaid Estate planning.
Guest Speaker: Attorney-Julia Greenberg, Esq. of Lamson & Cutner, P.C.
Next month’s support group: June 16th.

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.


Ask Ben: Universal Cuffs To Hold Utensils


My friend was diagnosed with ALS just under two years ago. He's able to chew and raise his arms but he cannot manipulate a fork or spoon. I have heard of a wrist wrap that can hold utensils. Do you think this will help him eat independently?

- Michelle from Nassau, NY

It is certainly worth trying. A universal cuff can be considered for someone who has difficulty clasping with his fingers but who can raise his forearms.

The Universal Cuff holds a utensil firmly slipped into the pouch. The pouch is placed either within the palm or on the back of the hand. It has a strap that wraps around the palm and back of your hand to secure it. With the palm side of your hand facing down, the head of the spoon or fork extends towards the thumb side. The utensil is now no longer dependent on fingers but on wrist or forearm movement.

A universal cuff can also hold a pen, stylus, pointer, or other instrument. For some activities, like the use of a phone or keyboard, you may need to turn the cuff to face out from the hand instead of in. This will depend on the comfort and flexibility of your wrist and forearm.

Simple universal cuffs can be found in the $10-$15 range. There are universal cuffs with an additional strap for stability to wrap around the wrist or forearm. They can be in the $30-$40 range.

You can do a search on the Internet or click on the examples below. There are many available.

North Coast Medical Products Cuff

Active Forever Cuffs

Universal Cuffs on Amazon

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.


ALS In-Service Given For Staff
At Hudson Valley VA Center

The ALS Association Greater New York Chapter giving in-service training to Veterans Administation staff in Wappingers Falls, NY.

Military Veterans are twice as likely to develop ALS as people who have not served. That’s why the Veteran Administration’s Hudson Valley Health Care System asked The ALS Association Greater New York Chapter to visit their Castle Point Campus in Wappingers Falls, NY recently to provide in-service training on caring for ALS patients.

Helen Mayer, RN and Nancy Brenner, LCSW, Patient Services Coordinators who manage the Greater New York Chapter’s service area that covers Westchester, Rockland and Lower Hudson Valley presented to over 30 staff members from the interdisciplinary team from the VA's home based program including doctors, nurses, social workers, dietitians, nurse practitioners, and recreational therapists. The Wappinger Falls VA’s goal in requesting the inservice was to help them further their knowledge about veterans in their care who have ALS.

The Greater New York Chapter offers in service training on ALS at no cost to multidisciplinary teams treating patients with ALS at health care facilities such as Hospitals, Nursing Homes, Rehabilitation Centers, Home Care Agencies and Hospices. If you would like more information about our program or would like to request an in-service training, please contact Intake and Support Program Manager Tracy Sandy-Ali, LPN at (212) 720-3060 or tsandyali@als-ny.org.


Research Update: The ALS Association, Harvard Stem Cell Institute, and Massachusetts General Hospital Neurological Clinical Research Institute Collaborate with GlaxoSmithKline on New ALS Clinical Trial

The ALS Association, Harvard Stem Cell Institute, and Massachusetts General Hospital Neurological Clinical Research Institute today announced they are collaborating with GlaxoSmithKline (GSK) on a clinical trial to evaluate the potential of an anti-epileptic drug in ALS patients. In parallel testing, brain cells will be made from each patient’s stem cells to see if they can predict which patients might respond to the medicine.

The trial will evaluate the potential of the drug, Retigabine, which has a unique mechanism of action and can calm the excitability of nerve cells that are thought to cause seizures. These “hyperexcitable neurons” are also thought to play a role in ALS. Alongside testing of the medicine, scientists will for the first time create stem cells from these patients to see if they can be used to determine in advance which patients could benefit from the medicine.

The study is being led by Brian Wainger, M.D., Ph.D., of the department of Neurology at Massachusetts General Hospital, in collaboration with Merit Cudkowicz, M.D., Chief of Neurology at MGH. It will be performed at 12 academic sites within the Northeast ALS Consortium, an international, independent, non-profit group of researchers who collaboratively conduct clinical research in ALS and other motor neuron diseases. GSK will provide the drug, and funding support will come from HSCI, The ALS Association, the MGH NCRI and GSK.

“This novel study will provide us with a better understanding of neuron hyperexcitability, a potentially important disease mechanism in ALS patients,” said Lucie Bruijn, Ph.D. MBA, Chief Scientist for The ALS Association. “This powerful collaboration of leaders in the fields of stem cells, clinical neurology, ALS research and GSK will be the first time that lab data from patient derived stem cells with disease-specific properties that respond to drugs have formed the basis for a clinical trial. It is our hope that this novel approach demonstrates promising results and leads to better clinical trials for ALS patients in the future.”

ALS and Hyperexcitability

A large body of data supports the hypothesis that neurons become hyperexcitable in ALS, firing more than they normally do. Such overactivity may contribute to the death of the nerve cells, considered a root cause of the disease. In cell models of ALS, Retigabine has shown the ability to reduce excitability and prolong survival in the lab.

Pre-clinical work leading up to this study was performed at Boston Children’s Hospital and Harvard University. Stem cell modeling development was supported by Project ALS and National Institute for Neurological Disorders and Stroke (NINDS) with identification of Retigabine as a target supported by Target ALS, ALS Association, Harvard NeuroDiscovery Center, American Brain Foundation and NINDS.

In this collaborative study, researchers will test whether Retigabine can reduce excitability of upper and lower motor neurons. The study will include non-invasive measurements of nerve cells and nerve function as biomarkers of the effect of the drug. In addition, blood cells from treated subjects will be isolated and studied using stem cell technology to uncover cellular determinants of drug response. This is the first time that this technology has been applied in a clinical trial and could open up new possibilities for drug research and development.


Cookie Company Founder Donates
to Chapter’s ALS Center In Stony Brook

Theresa Donovan-Imperato, Nurse Coordinator for the Stony Brook Hospital ALS Center (left) and Diane Marketta, founder of Aunt Diane Cookies (right).

Part of the slogan for Aunt Diane Cookie company is "Spread the YUM!” This year, founder Diane Marketta is also helping to spread ALS awareness while promoting her delicious cookies. Diane declared February 12th the First Annual YUM Day and all profits from her company’s cookie sales that day went to the ALS Center at Stony Brook University. The benefit was in memory of her Uncle Mike who died in 1990 at the age of 56 from ALS. Mike’s birthday is February 12th and Diane thought that there was no better way to celebrate than with a gift to The ALS Association Greater New York Chapter’s Certified ALS Center. This year Theresa Donovan-Imperato, Nurse Coordinator for the Stony Brook Hospital ALS Center, accepted the $500 donation for the chapter during a ceremony at the Hilton Garden Inn on the Stony Brook University campus in March.

After this first fundraiser, Diane has set her sights a little higher for the next one. “Every February 12th will be YUM Day at Aunt Diane Cookies when all cookie sales profits from that day are donated to ALS,” she said. “My goal for next year is $5,000.”

You can find Aunt Diane Cookies online at www.auntdianecookies.com.


PALS Author, Activist and Advocate Honored

Photo by Mahvash Saba

Congratulations to PALS Sonal Shah who was recognized by the Somerset County Commission on the Status of Women for her work as a volunteer and for raising awareness of ALS. Sonal was one of 20 Outstanding Women in Somerset County honored by the commission this year. Sonal was also presented with a resolution from the Township of Bernards in recognition of her work as an ALS advocate. She recently wrote a book about her experiences entitled “My Life, Legacy and ALS.”


New Amsterdam City Swim to
Raise Funds for ALS Research

The inaugural New Amsterdam City Swim will be held on Sunday, June 21 in New York City. Participants will swim from Pier 45 to Pier 26 along Hudson River Park to raise funds for ALS research. Volunteers for the Swim are needed. Come to our New York City Walk to Defeat ALS on Saturday, May 2 and sign up to volunteer. You can also learn more about the New Amsterdam City Swim by watching this inspiring video. Head over to www.newamsterdamcityswim.org for more information. Hope to see you on May 2 and June 21.


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, please click here.


MAKE A DIFFERENCE

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.

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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