ALS Association Greater New York Chapter

 
The ALS Association

May 2014 Monthly Update | The ALS Association Greater New York Chapter

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May is ALS Awareness Month.
You Can Get Involved!

Seventy five years after Lou Gehrig gave his famous retirement speech in Yankee Stadium on July 4, 1939, there is still no cure or effective treatment for ALS, the disease that took the life of the legendary "Iron Horse” and now bears his name. To bring attention to this disease that continues to devastatingly impact our lives, every May we commemorate ALS Awareness Month with events, media and a number of other awareness raising activities.

It all starts with your story! There is no better tool for awareness than your ALS story. Take some time out of your day and give voice to that story. Most people know who Lou Gehrig was, but they should also know about the life of your dad, your mom, your sister, your brother, your aunt, uncle or cousin, your neighbor, your colleague, and you.

Here are some more ways you can get involved with the Greater New York Chapter during ALS Awareness Month:

We kick off the month with the first Walk to Defeat ALS of 2014 on Saturday, May 3rd in New York City when thousands of people come together at Hudson River Park to make the two mile walk. 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.

We continue our awareness campaign with the National ALS Association Advocacy Day and Public Policy Conference in Washington D.C. from Wednesday, May 7th through Friday, May 9th, when our Greater New York Chapter Delegation heads to Capitol Hill with PALS and other advocates to tell our ALS stories to our elected officials and push for more funding for ALS research. If you’re interested in joining us, contact Kim Peters at (212) 720-3054 or kpeters@als-ny.org.

Our next Walk to Defeat ALS will be held at the beautiful seaside promenade in Long Branch, NJ on May 18th. Sign up at www.alswalks.org or contact Sarah Pattison at (212) 720-3042 or spattison@als-ny.org for more information.

The Chapter’s website (www.als-ny.org) has information about these and other ALS Awareness Month activities, as well as news about research and services. You can always call the Chapter at (212) 619-1400. We are here to help!


ALS Awareness All Year Round

May isn’t just about flowers and ALS Awareness month!

Extend your support in May and beyond by helping to improve the quality of life for people with ALS not only today but every day. To make a donation or for more information, please visit www.als-ny.org or contact Kim Peters at (212) 720.3054 or kpeters@als-ny.org.

Calendar of Events

5/3 – New York City Walk to Defeat ALS. To register or donation, visit our website at: www.alswalks.org

5/7 - 5/9 – National ALS Advocacy Day & Public Policy Conference in Washington, DC. For more information, please contact Kim Peters at (212) 720-3054 or kpeters@als-ny.org

5/18 – Long Branch Walk to Defeat ALS. To register or donation, visit our website at: www.alswalks.org

Save the Date - June 20th: Milton Safenowitz Post-doctoral Fellowship Symposium and Award Ceremony. For information, please contact Kim Peters at (212) 720-3054 or kpeters@als-ny.org

Are you planning an event in your community to raise funds and awareness for ALS in 2014?

Whether it’s a bake sale at a school, a rummage sale at your church, a poker night at your home, or a happy hour at a bar or restaurant, you can organize an event in your community that suits you. For more ideas on how you can help raise funds and awareness for research & patient services through an event in your neighborhood, contact Ally Davis at adavis@als-ny.org.

 

May Support Groups

NORTHERN NJ/
SADDLE BROOK

Thursday, May 1st
7 to 8:30 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 month’s support group
meets: June 5th.

NASSAU COUNTY, NY
Sunday, May 4th
2 to 4 pm
North Shore LIJ -
Plainview Hospital
888 Old Country Road
Plainview - Downstairs
Contact: Theresa Imperato, RN,
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: May is ALS Awareness Month
Next month’s support group
meets: June 1st.

SUFFOLK COUNTY, NY
Tuesday, May 6th
6 to 8 pm
Stony Brook University
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN,
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: May is ALS Awareness Month
Next month’s support group
meets: June 3rd.

HUDSON VALLEY/
FISHKILL, NY

Tuesday, May 6th
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
Topic: Open Discussion
Next month’s support group
meets: June 3rd.

WESTCHESTER, NY/
WHITE PLAINS

Tuesday, May 13th
6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7
1st Floor, Rm G-41
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Open Discussion
Next month’s support group
meets: June 10th.

CENTRAL NJ/
NEW BRUNSWICK

Please note change in date this month.
Saturday, May 17th
1 to 3 pm
Rutgers Robert Wood Johnson Medical School
Medical Education Building
Room 108A
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN
(732) 710-8832
Topic: Open Discussion
Next month’s support group
to be announced.

MANHATTAN, NY
Tuesday, May 20th
6 to 8 pm
Phillips Ambulatory Care Center
( Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Dept.
5th Floor Conf. Room
Contact: Jody Wiesel, PhD
(917) 699-9751
Guest Speaker: Eileen Kapeler, Nutritionist
Topic: The importance of nutritionand the ALS patient
Next month’s support group
meets: June 17th.

TELEPHONE SUPPORT GROUPS
For caregivers and patients.
Patient group - Every other Friday
from 3 to 4 pm starting May 9th
(through the summer.)
Caregivers group - Currently on
a brief hiatus.
Contact: Sue Zimmerman, LCSW at (212) 720-3050



Saturday, May 3
New York City, NY
Sunday, May 18
Long Branch, NJ
Sunday, June 8
Saddle Brook, NJ
Saturday, June 14
Westchester, NY
Saturday, June 21
Somerset, NJ
Saturday, Sept. 20
Long Island, NY
  Sunday, Oct. 19
Hudson Valley, NY
 

Registration for the 2014 Walk to Defeat ALS season is open!
Visit www.ALSWALKS.org to register for a Walk near you this year!

The countdown to the first Walk to defeat ALS of the 2014 season is on!

Join us for the New York City Walk on Saturday, May 3rd at Hudson River Park’s Pier 45. For more information or to find a Walk near you, log on to WWW.ALSWALKS.ORG


Debbie Matenopoulos Donates
Portion of Her Recipe Book Proceeds
to Greater New York Chapter


When television talk show host Debbie Matenopoulos speaks about her father she says that he was her “strength,” her “heart” and her “laugher.” Niko Matenopoulos died of ALS and the experience profoundly affected her. Now she’s committed to bringing awareness and raising funds for ALS research.

Recently, Ms. Matenopoulos announced that a portion of the proceeds of the sale of her new recipe book, “It’s All Greek to Me” will go to the ALS Association.

Click here to read more and for free recipies from the book.


Research News: 2014 Shelia Essey Award
Recipient Announced


In 1996 The ALS Association Greater New York Chapter in partnership with the American Academy of Neurology inaugurated the Sheila Essey Award for ALS Research to acknowledge and honor an individual actively engaged in ALS research who is making significant contributions in research for the cause, treatment, prevention or cure for amyotrophic lateral sclerosis (ALS). This award is made possible through the generosity of the Essey Family Fund, in memory of Sheila Essey, who battled ALS for 10 years and died from the disease in 2004.

The 2014 recipient of the Sheila Essey Award for ALS Research is Jeremy Shefner, M.D., Ph.D. Dr. Shefner has been the principal investigator of numerous ALS trials, and earlier in his career, he developed expertise in electrodiagnostic medicine and used that knowledge to develop motor unit number estimate (MUNE) as an objective biomarker to track ALS disease progression. In 1995, Dr. Shefner co-founded the Northeast ALS Clinical Trials Consortium (NEALS) along with Merit Cudkowicz, M.D., M.Sc., to coordinate ALS clinical trials.

Click here to read more.


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.

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 or contact Rebecca Silver Fisher at (212) 720-3043 or rsilverfisher@als-ny.org.

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 Kim Peters at (212) 720-3054 or kpeters@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 or learn how you can help people with ALS. You can also 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.

Donate

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. Kim Peters at (212) 720-3054 or kpeters@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 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.

Learn more:  Research | Blog | How to Help 


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