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


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April 2015

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2015 Advocacy Day &
Public Policy Conference

Sunday, May 10 - Tuesday, May 12

Join our Chapter's delegation of New York & New Jersey advocates in Washington, DC.

Please download the conference brochure to learn more about the conference agenda, registration fee and hotel information.

For additional information, please contact John Nolan at (212) 720-3051 or at jnolan@als-ny.org.


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

Tuesday, 4/14 - NJ Walk Kickoff. Info: Kristen Cocoman at (212) 720-3048.

Thursday, 4/16 - Shop for a cure! Lester's Clothing Store, at their Greenvale and Rye Brook locations.Portion of proceeds will go to the chapter. Info: Kristen Cocoman at (212) 720-3048.

Saturday 4/18 - Stormin 4 Norman’s ALS Wine Tour. North Fork Wine Trail. Pick up 10 am/Drop off 6 pm from NYC. $150 per ticket. Info: HALEY.E.MARKS@gmail.com.

Sunday, 4/19 - NJ Walk to Defeat ALS Canvassing Day, The New West Brook Tavern, Bound Brook, NJ. Info: contact Reagan Swaine at (212) 720-3043.

Tuesday, 4/21 - Young Professionals Networking Night. Brinkley's Soho at6 pm. Info: alsypg@gmail.com.

Sunday, 4/26 - Super Fun Bowling Fundraiser. Showplace Entertainment Center, Staten Island, NY from 2-4 pm. Info: annmarieb994@gmail.com.

April is National Volunteer Month! The Greater New York Chapter is grateful to our volunteers. With your assistance, we are able to provide services to our families and sponsor many events throughout the year. So, whether you visit with one of our families; come to the office to help out; or attend any of our events – we appreciate you!


Children & Teens Day
Sunday, April 26

The Children and Teens Day Event will take place in the Greater New York Chapter office on Sunday, April 26, from 11:30 am to 3 pm. This event is open to children and teens, ages 8-18, who lost a loved one to ALS. We will have an art-therapy oriented program during which the kids can make scrapbooks.

As always, we hope that, by working with an art form, kids may get more in touch with feelings or thoughts they have about their loss and bereavement. Making scrapbooks is a great way to open up communication. It can also be used to help heal from a tragedy or to process feelings about the loss itself, even if the kids choose not to share feelings verbally with the group. We would ask them to bring photographs of their loved one, or photographs with their loved one. We will have plenty of scrapbooking items for them to work with as well. In addition to the craft, we will have our traditional pizza lunch, including an ice cream sundae bar.

RSVP by 4/17 to Lindsay Levine at (212) 720-3045, or Sue Zimmerman, LCSW, at (212) 720-3050 or zimmerman@als-ny.org.

April
Support Groups

NASSAU COUNTY, NY
No April meeting due to
Easter & Passover

North Shore LIJ
Plainview Hospital
888 Old Country Road
Plainview - Downstairs
Contact: Theresa Imperato, RN,
(516) 946-5467
Cindy Keyser-Posner, LMSW,
(631) 416-2767
Topic: Open discussion
Next meeting: May 3rd.

NORTHERN NJ/
SADDLE BROOK

Thursday, Apr. 2nd - 7 to 9 pm
Kessler Institute for Rehabilitation
300 Market Street
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Topic: Open discussion
Next meeting: May 7th.

SUFFOLK COUNTY, NY
Tuesday, Apr. 7th - 6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN,
(516) 946-5467
Cindy Keyser-Posner, LMSW,
(631) 416-2767
Topic: Avocacy Day &
how you can help
Next meeting: May 5th.

HUDSON VALLEY/
FISHKILL, NY

Tuesday, Apr. 7th
6:30 to 8:30 pm
Ambulatory Surgery Center
Building C, 3rd Floor
200 Westage Business Center,
Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Guest Speaker: Allen Feller,
Elder-law Attorney
Next meeting: May 5th.

WESTCHESTER, NY/
WHITE PLAINS

Tues., Apr. 14th - 6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Ave., Bldg 7,
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Group will start with an open discussionand then will break into separate groups for patients and caregivers.
Next meeting: May 12th.

CENTRAL NJ/NEW BRUNSWICK
Saturday, Apr. 18th
1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Ctr., Level 2
Community Education Room
100 Kirkpatrick Street
New Brunswick, NJ
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Guest Speaker: Sarah Pattison, GNY Chapter
Topic: Walk to Defeat ALS
Next meeting: May 16th.

MANHATTAN, NY
Tues., Apr. 21st - 6 to 8 pm
Phillips Ambulatory Care Ctr
(Mt. Sinai Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Department
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open discussion
Next meeting: May 19th.

TELEPHONE SUPPORT GROUPS

Patient group – Meets weekly every Friday from 2:30 to 3:30 pm – alternates between a “talk” group and “mindfulness based stress reduction exercises” (meditation & guided imagery).

Caregivers group – Every Friday from 4 to 5 pm.

If you are interested in either group (patient or caregivers) please call Sue Zimmerman, LCSW at (212) 720-3050.


In A Pickle, A PALS Fight For A Cure

Arthur Cohen selling PickALS at the Hudson ValleyWalk to Defeat ALS in 2014

Arthur Cohen has a motto he’s repeated ever since he was diagnosed with ALS last year: When life hands you lemons you make PickALS (pronounced pickles). Not everyone can make a saying like that work but Arthur began making pickles out of the cucumbers he grew in the backyard of his New Jersey home a few summers ago and he decided that he’d turn his hobby into a fight against Lou Gehrig’s Disease. Arthur’s friends, family and neighbors were already praising his pickle recipe so he figured he’d use this talent to raise money toward a cure. With the help of his wife, Janet, an advertising copywriter who came up with the name PickALS, they launched a pickle-making mission.

“Basically, Arthur is the nicest guy you'd ever want to meet,” said Debbie Schlossberg, LMSW, one of The ALS Association Greater New York Chapter’s patient services coordinators for New Jersey. Arthur gave Debbie a jar of pickles and told her he wanted to raise money for the chapter. She then introduced Arthur to the Walk to Defeat ALS staff. The first opportunity to partner with the chapter came at the Hudson Valley Walk to Defeat ALS last October. Arthur and his team sold 175 jars raising over $1,000 in one afternoon. “We met a lot of great people that day,” he said. “It was a wonderful experience.”

Since then, Arthur has raised more than $8,600 for the chapter. He’s also been amassing volunteers to assist him with his endeavor. Who has he enlisted so far to help? “Who doesn’t help us,” said Arthur, who also still works as a professional photographer in his Manhattan studio. “Friends, family, neighbors and now friends of friends, friends of family and friends of neighbors. A group from the local high school came over this winter and did a great job.” His pickle-making volunteers have certainly been busy. They assembled over 3,000 jars last year alone and this year they’re averaging 100 jars per week. “It is very grass roots,” he added.

This endeavor may have started as Arthur’s idea but since its inception he’s created what he calls a PickALS Brine Trust that includes an impressive group of friends and neighbors contributing many different talents. “This is only a tiny bit about me,” Arthur said. “It's more about friends, family and community. People getting together in a fun atmosphere to try to make a difference and not giving up hope. Equal parts therapy, altruism and capitalism.”

Arthur and his team have been delivering the jars locally and to New York City filling orders by hand, but the group just revealed that it secured a deal with a manufacturing partner with more details to come soon. PickALS is also launching a website soon at www.PickALS.org.

It’s been a little over two years since Arthur first experienced the symptoms of ALS, which he said was rough at the beginning. “PickALS has given my life new meaning and has given me hope,” he said. “From a cucumber to a cure!”

Want to learn more about PickALS or looking to purchase a jar? Email info@pickals.org and find them on Facebook here.


Delegation From Yonkers Honors
ALS Ice Bucket Challenge
Co-founder in NYS Capital

Pat Quinn sits with NYS legislators along with Dorine Gordon, President and CEO of The ALS Association Greater New York Chapter and Kathy Lahey, Executive Director of The ALS Association Upstate Chapter.

The state delegation that represents Yonkers, Senate Democratic Leader Andrea Stewart-Cousins, Senator George Latimer, Assembly Member Shelley Mayer and Assembly Member Gary Pretlow, recently honored Yonkers native Patrick Quinn, the co-founder of the Ice Bucket Challenge, with a Resolution on the Senate and Assembly floors.

The Greater New York Chapter and The Upstate New York Chapter were also in Albany to advocate for ALS in New York State’s capital. Dorine Gordon, President and CEO of The ALS Association Greater New York Chapter and John Nolan, Chief Development Officer of The ALS Association Greater New York Chapter were joined by Kathy Lahey, Executive Director of The ALS Association Upstate Chapter, to visit with state legislators.

As the Resolution states, “As a result of the popularity of the challenge, people from across the country, in every imaginable setting, successfully raised $62.5 million in donations for the ALS Association between July 29th to August 23rd of 2014, compared to $2.4 million during the same period the year prior.” Expanding on that figure, the ALS Association reports that between July and September of 2014, $115 million was raised, with a total of $220 million worldwide.

Click here to see comments by state legislators and a video of the remarks on the resolution by Senator Andrea Stewart-Cousins.


Pat Quinn Inducted Into
Irish America Hall of Fame

Linda Legault, Les McCarthy, Pat and Jennifer Quinn, and Elaine McCarthy at induction of Pat Quinn into Irish America Hall of Fame at JW Marriott Essex House, NYC on March 16, 2015.

On Monday, March 16, Pat Quinn was inducted into the Irish America Hall of Fame at the JW Marriott Essex House in New York City. On hand to help celebrate were Pat’s wife, Jennifer Quinn, Greater New York Chapter CEO Dorine Gordon, Hudson Valley Walk to Defeat ALS leaders, Linda Legault and Les and Elaine McCarthy.

The Irish America Hall of Fame was founded in 2010 to honor the extraordinary achievements of Irish-American leaders, from their significant accomplishments and contributions to American society to the personal commitment to safeguarding their Irish heritage and the betterment of Ireland.

Also inducted this year along with Pat Quinn were Hillary Rodham Clinton, former Secretary of State; Robert J. McCann, CEO of UBS Group Americas; and Emmett O’Connell, head of Great Western Mining. For more information please click here.


Thank You To Lift Chair Donors

Our loan closets generally receive 10-12 donated lift chairs every year. During the last three months of 2014 we received nine lift chairs! This extraordinary period enabled us to provide a lift chair to every single person who was waiting for one.

Lift chairs are reclining lounge chairs with an added mechanism to “stand” the chair up enough to help someone get from sitting to a near standing position. It’s a tremendous help to both the person who has difficulty standing and to the caregiver. Caregivers are in a difficult position because they are reaching and lifting and must be careful not to strain their back or legs.

In 2014 we loaned/donated lift chairs to 36 individuals with ALS. If you have any questions about lift chairs or other equipment that might be helpful to you, please contact Ben Lieman, ATP, Assistive Technology Specialist, at (212) 720-3057 or blieman@als-ny.org.


Assistance To Obtain Adapted
Vehicles For Vets With ALS

A recent change in Veteran’s Administration regulations has made it easier for someone diagnosed with service related ALS to obtain an adapted vehicle. Financial assistance for adapted vehicles or adaptations made to an existing vehicle has been available to Vets for a while. Eligibility is based on the Veteran’s limited use of his or her hands or legs, which would potentially be a factor for someone with ALS. What is new is that service related ALS patients no longer need to wait until their hand or leg function is affected. They can apply for this program at anytime!

VA Form 21-4502 gets the process started. Be sure in highlight on the form that the diagnosis is ALS. Click here for the form on the VA website.

You should also discuss this matter with the Veteran’s Benefit Program or someone you already work with at the VA.

If you have any questions you can also contact Ben Lieman, ATP, Assistive Technology Specialist, at (212) 720-3057 or blieman@als-ny.org.


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.

Información en Español

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.


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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