September 2016 Monthly Update | The ALS Association Greater New York Chapter


ALS Banner - Fighting on every front to improve living with ALS.

September 2016

[donate now] [register] [contact us] [tell a friend] [visit our website]

Icon Facebook Icon Twitter Icon Linkedin Icon Instagram Icon Youtube

Walk to Defeat ALS Takes on New Meaning For One Long Island Family

The Long Island Walk to Defeat ALS, which will be held this year on Saturday, September 17th, is the largest ALS Association walk in the nation, with more than 7,000 participants. Each walker, fighting for a common cause, yet every person holding onto their own unique story.

The Finkelstein family.

This year one story that stands out is Cindy Finkelstein’s - Captain of the newly formed "Team Cindy."

"I’ve always walked under the name Team Gordon. I was walking in memory of my mother, my aunt and my grandfather," Cindy said.

This year for the first time the Long Island Walk to Defeat ALS takes on a whole new meaning for Cindy and her family, since she was diagnosed late last year with ALS.

"This year is game changing for me. Getting people to support the walk is even more important, because it hit me personally. And now I’m raising much more than I ever did in the past," Cindy said.

Cindy says today things are different. While there is still no cure, she says there is more hope than ever before, with a constant stream of new research programs and genetic discoveries.

"You have to choose to have a positive attitude, so much of it depends on your mental state and your willingness to stay alive. Half the battle is making sure that you stay positive, because there is hope, I truly believe they will find a cure that will save my life," Cindy said.

The Finkelstein family says the support from the ALS Association Greater New York Chapter is helping Cindy stay strong. She says she expects a big turnout this year for Team Cindy. Cindy will also be walking for her cousin who was diagnosed with ALS four years ago.

"We will see the support when it comes to the walk but I expect several friends and family members to be there. I still have people constantly asking to sign up. I have people from different walks of life - from my childhood, college, law school friends, camp friends, work friends, tennis friends and family - all coming together for the walk. What can be more inspiring than that?" Cindy said.

Cindy has a message for anyone debating whether or not to come out to the Long Island walk.

"Please get involved because it’s really important to keep the funds flowing so this research can continue," Cindy said. "An important word I realized these past few months is empathy the idea of understanding what others are going through. We should all support one another, because you never know when you will be the one asking for help."

Sign up for the Long Island Walk to Defeat ALS today. The walk will be held on Saturday, September 17th. For more information, head to our website at www.als-ny.org. You can also contact Linda Berman at (212) 720-3042 or Lberman@als-ny.org.


2016 Fall Walk Dates

Register at www.alswalks.org

Long Island -   Saturday, Sept. 17th
Central Jersey -   Sunday, Oct. 9th
Hudson Valley, NY -   Sunday, Oct. 16th

September Events

9/13 - YPG Happy Hour Location TBD. | For more information, email Brett Murphy, Manager of Fundraising and Special Events at bmurphy@als-ny.org

9/21 - Young Professionals Group Meeting – Location in Midtown NYC TBD. For more information, email Brett Murphy, Manager of Fundraising and Special Events at bmurphy@als-ny.org.

September Support Groups

NORTHERN NJ
Thursday, Sept. 1st - 7:30 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: Practical Tips for PALS from a Physical Therapist
Speaker: Lynne Stallworth, DPT
Next support group: Oct. 6th

LOWER HUDSON VALLEY
Tuesday, Sept. 6th, 6-8 pm
Ambulatory Surgery Center
Building C, 1st Floor, Suite 130
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic: Open Discussion
Next support group: Oct. 4th

SUFFOLK COUNTY, NY
Tuesday, Sept. 6th, 6-8 pm
Stony Brook University,
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: Open Discussion
Next support group: Oct. 4th

NASSAU COUNTY, NY
No September meeting due to holiday

Northwell Health*- Plainview Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Next support group: Oct. 2nd

WESTCHESTER, NY
Tuesday, Sept. 13th - 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: Open Discussion
Next support group: Oct. 11th

CENTRAL NJ
Sat., Sept. 17th - 1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Center
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
Topic: Practical Tips for PALS from a Physical Therapist
Speaker: Lynne Stallworth, DPT
Next support group: Oct. 15th

MANHATTAN, NY
Tuesday, Sept. 20th - 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 Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open Discussion
Next support group: Oct. 18th

CAREGIVERS SUPPORT GROUP -
NORTHERN NJ

Thursday, Sept. 22nd - 7:30 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: Additional Support Group This Month For Caregivers

TELEPHONE SUPPORT GROUPS
Patient group:
Every Friday - 2:30 to 3:30 pm
Caregivers group:
Every Friday - 4 to 5 pm
Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction.
A new telephone support group has been formed for patients newly diagnosed with ALS. Please call for more info.
Contact: Sue Zimmerman, LCSW, (212) 720-3050


Research News: New Protein Target Emerges
for C9orf72 the Most Common Genetic Form of ALS

Targeting a single protein, called SUPT4H1, reduces the levels of the three toxic entities created by the C9orf72 gene expansion, the most common genetic cause of ALS, according to a study published in the journal Science. The finding suggests that SUPT4H1 may be a promising candidate for therapy development for people whose disease is caused by expansion of the C9orf72 gene.

The study was supported by The ALS Association and led by senior investigators Leonard Petrucelli, Ph.D., of the Mayo Clinic in Jacksonville, Fla and Aaron Gitler, Ph.D., of Stanford University in Stanford, Calif., along with co-lead investigators Nicholas Kramer, Ph.D., Yari Carlomagno, Ph.D., Fen-Biao Gao, Ph.D., and Yong-Jie Zhang, Ph.D.

Click here to read more about this research news.


Workplace Giving: The Inside Scoop

Workplace giving programs help provide employees with a simple way to donate to charities they care about.

There are many ways employees can contribute money, including through payroll deductions, joining workplace giving federations and participating in internal fundraising events. Workplace giving not only benefits the participating charities, but also employees who become engaged in giving back.

FEDERAL, STATE and MUNICIPAL CAMPAIGNS

The Combined Federal Campaign (CFC) is a workplace giving campaign for federal employees, certain civilian employees, military personnel and postal workers. State Employees can participate in the State Employees Federated Appeal (SEFA), and municipal workers have the Combined Municipal Campaign (CMC): To support The ALS Association Greater New York Chapter, use the following codes on your campaign pledge cards:

• Combined Federal Campaign: CFC code 56276
• State Employees Federated Appeal: SEFA code 99900019
• Combined Municipal Campaign: CMC code 1741

COMMUNITY HEALTH CHARITIES AND UNITED WAY PROGRAMS

If your company’s employee giving program includes Community Health Charities or the United Way, look for ALS Association Greater New York Chapter in the listing of charities you can support. If you can’t find our listing, you can always designate the Chapter by manually writing our name on your pledge.

• Write-In Option: The ALS Association Greater NY Chapter.

MATCHING GIFT

Many companies allow their employees to direct their charitable giving programs through matching gifts. When an employee notifies the company that he/she has made a charitable donation, the company will make a gift of the same amount, and in some cases double the amount, to the same charitable organization. Matching Gift Programs are a wonderful way for employees to make their charitable dollars stretch farther at no cost to themselves.

If your company is eligible, request a matching gift form from your employer, and send it completed and signed with your gift. We will do the rest. The impact of your gift to The ALS Association Greater New York Chapter may be doubled or possibly tripled!


National ALS Registry Releases
Updated Prevalence Estimates

The CDC released its August 4th report on the prevalence of ALS in the US. People living with ALS should self-enroll in the Registry to advance research, identify specific populations with ALS, and to ensure the most accurate reporting. For info about the full report or the ALS Registry contact Tracy Sandy-Ali in the chapter office at (212) 720-3060 or by email.

To register for the ALS Registry head to the secure portal at www.cdc.gov/als. Christine Dunn in the Chapter office can help with enrollment. Contact Chris at (212) 720-3044 or dunn@als-ny.org.


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 a good book to you. 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.

To find out 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, contact Brett Murphy at (212) 720-3052 or bmurphy@als-ny.org. Visit the YPG website here.


Every Drop Adds Up...

Here's how you can make a difference.

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. For more information contact Kristen Cocoman at (212) 720-3048 or email cocoman@als-ny.org.

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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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 movie 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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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.

Tribute

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.

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 


To unsubscribe to this newsletter change your email preferences: click here.