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

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July 2015

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Camps for Kids
Coping with ALS

by Sue Zimmerman, LCSW

In our continuing efforts to help children and teens that have a loved one with ALS, or have already lost a loved one to ALS, we wanted to let you know about some wonderful and supportive camping experiences for kids. The following organizations offer camping for kids who are directly affected by ALS or who have experienced a death and are grieving:

1. Camp HLC at Fairview Lakes YMCA in Stillwater, NJ. This weekend camp is free to children and young adults who have family members who are affected by ALS or have lost someone they love to ALS. For more information, go to the website, www.hopelovescompany.org.

2. Bob Sweeney’s Camp H.O.P.E. (in collaboration with Good Shepherd Hospice, Catholic Health Services), is a free two day camp for kids ages 5-17 who have experienced the death of an immediate family member. Children must be accompanied by one parent/legal guardian/caregiver who will participate in activities with the children. The next camp weekend will be on July 11 and July 12,2015. For information, call 631-465-6262.

3. Camp Good Grief on Staten Island is a weekend camp as well, but for grieving children and teens in general. It also is free. The camp has had experience with children of ALS families. It is held at the Jewish Community Center Manor Road Campus. The next camp weekend will be in early November 2015. Camp (Saturday-Sunday) is offered several times a year. For information and registration, see their website, campgoodgriefsi.org. You may also call 888-507-4474.

4. East End Hospice Camp Good Grief. This is a bereavement camp for children of all ages held in Southhold, NY. For details, please call 631-288-8400. There is no fee for attendance.

These camping programs offer children and teens a wide range of expressive activities, often using art, music, drama, journaling, sports and play to create positive memories and foster peer support as they cope with painful emotions -- whether they have a loved one with ALS, or are experiencing bereavement. Some of these organizations may offer support groups or counseling for kids as well. Early application is recommended. If your kids do attend any of these camps, please let us know about the experience!

Please feel free to contact Sue Zimmerman, LCSW, Chapter Patient Services Coordinator at (212) 720-3050 or zimmerman@als-ny.org if you would like to discuss emotional support for you and your family.

2015 Walk to Defeat ALS

Long Island, NY -   Saturday, Sept. 19
Hudson Valley, NY -   Sunday, Oct. 18


Registration Now Open!

Upcoming Events

Sunday, July 19th – Team ALS will participate in the Panasonic New York City Triathlon. For questions or more information, contact Kristen Cocoman at (212) 720-3048 or cocoman@als-ny.org.

Tuesday, July 28th – Long Island Walk to Defeat ALS Kick Off. For questions or more information, contact Sarah Pattison at (212) 720-3042 or spattison@als-ny.org.

Saturday, August 1st – Hudson Valley Walk to Defeat ALS Kick Off. For questions or more information, contact Sarah Pattison at (212) 720-3042 or spattison@als-ny.org.

July Support Groups

Thursday, July 2nd - 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: An ALS Diagnosis can change the way we view ourselves
Guest Speaker: Sharon Buck, MSW, LCSW Clinical Social Worker
Next support group meets: Aug. 13th.

Tuesday, July 7th - 6 to 8 pm
Stony Brook University
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Raising ALS Awareness -Walks and You
Guest Speaker: Kristen Cocoman,Director of Marketing andSpecial Events, ALSA- GNY.
Next support group meets: Aug. 4th.

Tuesday, July 7th - 6:30 to 8:30 pm
Ambulatory Surgery Center
Bldg. C, 3rd Fl.
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: Tips for Accessing the Computer and Other Assistive Technology Hints
Guest Speaker: Ben Lieman, Assistive Technology Specialist, ALSA-GNY
Next support group meets: Aug. 4th.

There will be no July Support Group
due to July 4th Holiday.

North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803 (Downstairs)
Contact: Cindy Keyser-Posner, LMSW,
(631) 416-2767
Next support group meets: Aug. 2nd.

Tuesday, July 14th- 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: Tips for Accessing the Computer and Other Assistive Technology Hints
Guest Speaker: Ben Lieman, Assistive Technology Specialist, ALSA-GNY
Next support group meets: Aug. 11th.

Tuesday, July 21st - 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 Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open discussion
Next support group meets: Aug. 18th.

Saturday, July 18th - 1:30 to 3:30 pm
Robert Wood Johnson Fitness & Wellness Ctr.
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
June 29: 7-9 pm
Topic: Legal and Financial Issues affecting the ALS Community
Guest Speaker: Madeline Tulipani, MBA, Director of Community Education and Outreach for Hanlon, Niemann & Wright, PC
Next support group meets: Aug. 15th.

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

ALS Ice Bucket Challenge Wins Ten
Cannes Gold Lions, Grand Prix for Good

Last week, the ALS Ice Bucket Challenge won a total of 11 awards at the Cannes Lions International Festival of Creativity, including the coveted “Grand Prix for Good” award.

ALS Ice Bucket Challenge co-founder Pat Quinn and his family, as well as the family of co-founder Pete Frates attended in person and received a standing ovation after the campaign was awarded the Grand Prix for Good. This award recognizes exceptional campaigns for charities or public service messages. View a video of the award ceremony here.

Held in Cannes, France, the festival celebrates the best in advertising, marketing, and public relations. In addition to the Grand Prix for Good award, the ALS Ice Bucket Challenge was honored in ten categories, including Branded Content and Entertainment and Promo and Activation.

Click here to read this story online and share on social media.

This August and Every August Until A Cure!

Research Updates: New Clinical Pilot Studies Will Use Biomarkers to Speed Therapy Development

The ALS Association and the ALS Finding a Cure Foundation are pleased to announce $3 million in funding for two new Phase II clinical studies through the ALS Accelerated Therapeutics (ALS ACT) initiative. Created as a collaboration with the Northeast ALS Consortium (NEALS) and the ALS Finding a Cure Foundation, ALS ACT is devoted to speeding the discovery of new ALS treatments in part through funding pilot clinical trials that employ biomarkers.

A biomarker is a measurement that can be used to improve diagnosis, classify disease subtype, track progression, ensure target engagement of the treatment, or determine response to therapy. Use of biomarkers allows trials to be shorter and smaller, speeding therapy development.

In collaboration with NEALS and Neuraltus Pharmaceuticals, Inc., Robert Miller, M.D. of the California Pacific Medical Center in San Francisco will lead a placebo-controlled, six-month treatment study to confirm a signal observed in a previous study of NP001, an immune system regulator. Inflammation is thought to be a contributing factor to ALS disease progression and existing NP001 data suggest that it may have an effect on inflammation in the immune system. Dr. Miller’s study of NP001 will examine the response rate in individuals with ALS who have elevated levels of two inflammatory markers: interleukin-18 (IL-18) and lipopolysaccharide (LPS). The findings from this study are expected to inform the design of potential future studies for individuals whose ALS is characterized by overactive inflammation.

Click here to read this story online and share on social media.

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.

#Challenge ALS

Help Create A World Without ALS. YOU TOOK THE ALS ICE BUCKET CHALLENGE…Now what? Turn the moment into a movement, and help 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.


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.


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.


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.


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.


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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