National Volunteer Month

April is National Volunteer Month. As you begin to answer the call to volunteerism, the ALS Association Greater New York Chapter has numerous opportunities for you and your whole family to get involved in the fight against Lou Gehrig's Disease, which will make a huge difference in the lives of people living with ALS.

Care Services - Those working directly with patients do a variety of tasks - reading, walking a dog, managing correspondence, delivering Thanksgiving Dinner, household chores and other tasks that may seem small, but are truly meaningful in the day-to-day lives of someone living with ALS. Contact Christine Dunn at dunn@als-ny.org or (212) 720- 3044 if you are interested.

Walk to Defeat ALS - The ALS Association's signature event - the Walk to Defeat ALS - is kicking into high gear locally. There are great opportunities to volunteer before, after, or during one (or more) of the seven Walks throughout the region - NYC; Long Branch, NJ; Saddle Brook, NJ; Bridgewater, NJ; Purchase, NY; Long Island; or Hudson Valley. Contact Ally Davis at adavis@als-ny.org or (212) 720-3049 if you are interested.

Advocacy - Take time and meet with your U.S. Representative, State Senator, Assembly Member, or other local elected officials and raise awareness for ALS. Contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051 to learn more on how to be an ALS advocate.

Administrative - Come to our downtown Manhattan headquarters once a week or once a month and help out with mailings, data entry, grant research, and other meaningful office activities. Contact Regina Ackley at Ackley@als-ny.org or (212) 619-1400 if you are interested.

Making a Difference

April is National Volunteer Month and we at the Chapter would like to take this opportunity to thank the wonderful folks that have volunteered for the Greater NewYork Chapter over the years and those who will make the commitment to volunteer this year.

One long-time volunteer, Rose Joyce of Bergen County, New Jersey, has been volunteering for the Greater New York Chapter foreightyears.Throughout those years she has helped numerous Walks to Defeat ALS, not just in New Jersey, but also in New York City, on Long Island, and most recently in the Hudson Valley. She is also a veteran of National ALS Advocacy Day, traveling to Washington, DC and speaking with Members of Congress about issues of importance to the ALS community. Rose was kind enough to talk about her experience as a volunteer and why she does all that she does.

“I lost my aunt Maggie to ALS in 2003, and unfortunately, I didn't know about the ALS Association and all of the wonderful things that it offers until right before she passed away. I never heard of this horrific disease until after my aunt was no longer able to move or speak, and a nurse at Bronx Lebanon hospital walked by me in the hallway, pointed to my aunt and said ‘I think that lady has ALS, you know, Lou Gehrig's.’

The nurse didn't know that I was there to visit her, just expressing her gut feeling to a stranger as she walked by my aunt's room, but she left me with words I will never forget.

I started walking with the Greater New York Chapter in 2004 (the North Jersey Walk was in Jersey City - Liberty State Park - at the time) and I started volunteering the following year as I learned more and more about this disease. I have since met so many PALS and their families, and I remain determined to help those who suffer from this disease. I enjoy helping out however I can with the Walks, Advocacy Day, and any other activities that I can help with! I will never forget how shocking it was when my aunt was finally diagnosed with ALS, and the pain of losing her. In her memory and those of all of our PALS, I always want to do whatever I can to help other families who are feeling the same.”

Thank you Rose. The Chapter appreciates your dedication. For more information, or to inquire about the Chapter’s Volunteer Program, please contact Christine Dunn at dunn@als-ny.org or(212)720-3044.

RETURN THE LOVE

Trying to think of something meaningful to do with your tax return? How about making an impactful donation to the ALS Association Greater New York Chapter? Your generous support can provide PALS with much needed services and medical equipment to help them improve their quality of life. For more information, please contact Loren Domilici at (212) 720-3060 or ldomilici@als-ny.org.

Upcoming Events

Family & Friends Caregivers Seminar
Saturday, April 6th 
11:15 am 3:00 pm 
East Setauket, NY (Long Island)

Designed for family, friends, and other non-professional caregivers, this seminar will provide comprehensive information about caring for those living with ALS, as well as caring for yourself.

For questions or to register, contact Christine Dunn at (212) 720-3044 or dunn@als-ny.org by April 4th. Click here for invitation (PDF).

Ask the Experts ALS Research Update
Sunday, April 14th 
1:00 pm 4:00 pm 
Cold Spring Harbor, NY (Long Island)

The Greater NY Chapter and Cold Spring Harbor Laboratory present this ALS research update. Join ALS Association Chief Scientist Lucie Bruijn, PhD and other leading scientists in the field of ALS research for this informative discussion on current ALS research efforts.

For questions or to register, contact Loren Domilici at (212) 720-3060 or ldomilici@als-ny.org by April 11th. View invitation here (PDF).

Children & Teens Day
Sunday, April 28th

The ALS Association Greater New York Chapter presents our Long Island Children & Teens Day! This fun and meaningful event will be held on Sunday, April 28th, 2013 at Dave & Busters. The event is for children and teens, between the ages of 8 and 18, who have a parent or other relative living with ALS. We will be enjoying crafts, arcade games, and lunch & dessert! Special thanks to Chapter Board member Marilyn Safenowitz for her generosity to make this day happen.

For additional information, or to register your children, please contact Cindy Keyser-Posner, LMSW at (631) 416-2767 or Theresa Imperato, RN at (516) 946-5467. Please RSVP by Monday, April 22nd to register.

April Support Groups

SUFFOLK COUNTY, NY
Tuesday, April 2nd 
6 pm to 8 pm 
Stony Brook University
Dept. of Neurology 
179 North Belle Meade Rd,
East Setauket
Contact: Theresa Imperato, RN,
(516) 946-5467
Topic: National ALS Advocacy Day

HUDSON VALLEY, NY
Tuesday, April 2nd
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg C, 3rd floor
200 Westage Business Center
Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Speaker: Jody Wiesel, PhD
Topic: Open Discussion

SADDLE BROOK / NORTHERN NJ
Thursday, April 4th
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ 
Contact: Debbie Schlossberg, LMSW
(732) 710-8832
Guest Speaker: Sarah Pattison, Walk Program Manager
Topic: Walk to Defeat ALS

NASSAU COUNTY, NY
Sunday, April 7th
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN, 
(516) 946-5467 & Jody Wiesel, PhD
(917) 699-9751
Topic: National ALS Advocacy Day

MANHATTAN, NY
(Note date change for April only.)
Tuesday, April 9th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Guest Speakers: Daryl Cochrane & Sarah Pattison from the ALS Association Greater NY Chapter
Topic: National ALS Advocacy Day & Walk to Defeat ALS

NEW BRUNSWICK / CENTRAL NJ
(Note date change for April only.)
Saturday, April 13th
1pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg,
Room 108A
180 Somerset Street
Follow signs to meeting 
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Guest Speaker: Sarah Pattison, Walk Program Manager
Topic: Walk to Defeat ALS

TELEPHONE SUPPORT GROUPS
Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
(212) 720-3050

For more information about our Support Groups go to the Chapter website: www.als-ny.org, Patient Services section or call (212) 619-1400.

NEW TELEPHONE SUPPORT GROUP:
The Chapter will soon be starting a telephone support group for adult children caregivers of ALS patients. This group has specific issues that can be understood by others "in the same boat" such as working and raising children, as well as caring for a parent with ALS. This support group will meet weekly via telephone for an hour-long conversation, during which adult children caregivers can feel free to share their experiences. If interested please contact Kunbi Oluwasusi, SWI at (212) 720-3045 or koluwasusi@als-ny.org.

Research News

ALS Association-Funded Study Finds Gene Mutation That Causes ALS Reduces Cellular Energy Supply

Researchers in London have shown that mutation in a gene that causes ALS reduces the energy supply in neurons and other cells, suggesting that the inability to produce sufficient quantities of energy is an important step in causing some cases of ALS. The study, published in the online scientific journal Neuron, is supported by The ALS Association’s Translational Research Advancing Therapies (TREAT ALS™) program.

“This discovery highlights the importance of energy to motor neurons and suggests that inability to produce sufficient quantities of it is an important step in causing some cases of ALS,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association. Motor neurons are the cell type that dies in the disease.

The research was led by Helene Plun-Favreau, Ph.D., and Andrey Abramov, Ph.D., both of the UCL Institute of Neurology at Queen Square in London. Read more…

My cousin is living with ALS. She is able to sit upright for short periods, but requires assistance to stand. It’s especially difficult assisting her getting in and out of the car. The extra reach required to place her on the car seat safely is precarious. Do you have advice that can help me with this task in particular?

- Lucy R. - Brooklyn, NY

This is a common issue, and caregivers should always take into account their own capabilities. Because a car seat is beyond the area you can place your feet, added stress is placed on the caregiver's back, and could easily result in a sprain or worse if proper precautions are not taken.

In this case a transfer board may be useful for Lucy and her cousin. This is a flat, smooth (wood or plastic) board that allows someone to sit on, and slide, from one place to another. Boards are about 10 inches wide, two to three feet in length, and often used from bed to wheelchair, wheelchair to commode, or wheelchair to car seat.

Depending on upper body strength, one may be able to transfer independently. For Lucy, she will likely be sliding her sister at the waist. A gait belt can be used to more evenly and securely distribute the pressure when sliding her sister. Some transfer boards have a plastic disc to sit on, which reduces the friction of sliding,  a benefit for both patient and caregiver. Ensuring the caregiver is also properly cared for, will help everyone involved.

Speak to your Occupational or Physical Therapist to determine if a transfer board is a good solution for you, and to also discuss optimal positioning when transferring.

- Ben

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 Advocacy at Work

Congressional Legislation Will Fund ALS Research Through 2013

On Thursday, March 21, Congress passed legislation which extends funding for two vital ALS research programs. The bill will provide $6 million to continue funding for the National ALS Registry through the end of this fiscal year. In addition, this legislation includes a nearly 20 percent increase in funding for the ALS Research Program (ALSRP) at the Department of Defense. ALSRP will receive $7.5 million this year, bringing total funding for the program to $40 million, all of which is explicitly focused on finding treatments for ALS. President Obama signed the legislation into law on March 26th.

“We want to thank our ALS advocates for reaching out to their Congressional representatives, especially in the current economic climate when every program in the federal budget is under scrutiny for cuts or elimination,” said Steve Gibson, ALS Association Chief Public Policy Officer. “It is the tireless efforts of people with ALS and their families throughout the year that has allowed for this funding to continue.” Read more…

Team ALS Half Marathon Success!!!

Team ALS: Running 4 A Cure was thrilled to be a part of the NYC Half Marathon this year! As one of the official Charity Partners of the race, Team ALS was able to offer several runners the opportunity to participate on behalf of a loved one.

Eleven runners took part in the race on March 17th wearing the Team ALS shirts and a great time was had by all! In total, over $6,000 has been raised to date with donations continuing to pour in. Stay tuned for upcoming announcements about joining Team ALS for the 2013 NYC Marathon November 3, 2013! For more information, contact Kristen Cocoman at Cocoman@als-ny.org.

I Walk Because...

ALS patients, family members and friends tell us why they Walk to Defeat ALS for The ALS Association Greater New York Chapter's "I Walk Because..." campaign. Click here to see some of the "I Walk Because" videos our teams have done with us. Send us your video to walk@als-ny.org and tell us why you Walk to Defeat ALS.

National ALS Registry

It's been over two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.

If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.

For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.

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.

If you live in New York please contact Christine Dunn at (212) 720- 3044 or dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@als-ny.org.

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 ALS Association's Young Professionals Group and upcoming meetings, please click here.

The Greater New York Chapter website now has information on ALS and Chapter services in Spanish.  If you know someone with ALS who may need information in Spanish, please refer them to www.als-ny.org/espanol.

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.

The 2013 ALS Advocacy Day & Public Policy Conference will take place May 8-10 in Washington, DC. Registration begins on Monday, February 11th. We hope to see you at Advocacy Day!

If you're interested in joining our advocacy efforts, please contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.

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 call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.

Make a generous gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here. Call Loren Domilici, Development Manager, at (212) 720-3060 or email ldomilici@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.

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 many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.