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


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November 2016

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In Honor of Caregivers Awareness Month The Greater New York Chapter Gives Thanks to All Our Caretakers

They are the silent warriors, the heroes that wake up every day to care for their loved ones. The caregivers whom without a second thought, step up when their family and friends are diagnosed with ALS.

Eric Roman-Cottes is the primary caretaker for his wife Nelly, and knows all too well the toll it can have on a family, but says he wouldn’t have it any other way.

Eric and Nelly Roman -Cottes.

"I will take care of her until the end no matter what it takes, just like she would do for me," Roman-Cottes said.

Nelly was diagnosed with ALS two years ago, and since then life has changed drastically for the Roman-Cottes family.

"A lot of the happiness is taken over by sadness. It’s sad, it’s very sad for both of us," Roman-Cottes said. "We are dealing with it the best we can. She is the one that gives me strength. She is a trooper."

Eric explained why being a caretaker can be isolating. Which is why he’s so thankful to have built a support system around him of his family and friends through The ALS Association Greater New York Chapter. He said he has learned the importance of still doing the things he loves, like playing sports, and spending time with his children. He says it is also important to get involved with the Chapter and help in the fight for a cure.

"To me it’s all about the research, if we do the walks, if we do the ice bucket challenges - anything that would bring a penny towards research has to be done," Roman-Cottes said.

Additionally, The Greater New York Chapter runs support groups specifically designed for caregivers, helping people like Eric realize they are not alone in their caretaking roles. Bob Baldwin has come to every support group meeting since he took on the role of caretaker for his wife Shirley, after she was diagnosed with ALS in 2014. He says the meetings have taught him how to manage caring for his wife, while still prioritizing himself.

"When my wife was first diagnosed I was retired, but now I have a new job and it is 24/7 with no time off," Baldwin said. "My wife takes medication 5 times a day, she has a feeding tube, and she can’t open or close buttons and snaps because her hands don’t work great anymore. It’s a matter of a whole schedule of things that I need to do for her all day long."

Bob says while it can be hard, his family has found a routine and they make it work. He vows to take care of his wife, and to continue to fight alongside her.

"There hasn’t been enough research or work on it to solve the problem, but I am hopeful I will see a cure in my lifetime," Baldwin said.


November Events

11/6 - TCS New York City Marathon with Team ALS – New York, NY | For more information, contact Kristen Cocoman

11/16 - Young Professionals Group Meeting 7 PM. 42 Broadway, New York, NY | For more information, contact Brett Murphy.

11/18 - Young Professionals Group Fire & Ice Holiday Gala 7:30 - 10:30 PM LAVO, 39 E 58th St, New York, NY | For more information, click here or contact Brett Murphy.

Click here to see our full calendar of events.

November Support Groups

LOWER HUDSON VALLEY, NY 
Tuesday, November 1st - 6 to 8 pm
Ambulatory Surgery Center
Building C, 3rd Floor
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer RN
(845) 520-0952
Nancy Brenner LCSW
(914) 406-3513
Topic: National Caregivers Month
Speaker: Mr. Ross Ogden (Spouse/Caregiver)
Next support group meets: Dec. 6th

SUFFOLK COUNTY, NY
Tuesday, November 1st - 6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contacts: Theresa Imperato RN
(516) 946-5467
Cindy Keyser-Posner LMSW
(631) 416-2767
Topic: National Caregivers Month
Next support group meets: Dec. 6th

NASSAU COUNTY, NY
Sunday, November 6th - 2 to 4 pm
Northwell Health - Plainview Hospital 
888 Old Country Road
Plainview, NY 11803 (Downstairs)
Contact: Cindy Keyser-Posner LMSW
(631) 416-2767
Carol Bishop RN (631) 219-0947
Topic: National Caregivers Month
Next support group: Dec. 4th

WESTCHESTER, NY
Tuesday, November 8th - 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: National Caregivers Month
Speaker: Mr. Ross Ogden (Spouse/Caregiver)
Next support group meets: Dec. 13th

MANHATTAN, NY
Tuesday, November 15th - 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 Dept., 5th Floor Conf. Room
Contact: Jody Wiesel PhD
(917) 699-9751
Topic: National Caregivers Month
Next support group meets: Dec. 20th

CENTRAL NJ
Saturday, November 19th - 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: National Caregivers Month
Next support group meets: Dec. 17th

NORTHERN NJ
CANCELLED
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: Open Discussion
Next support group meets: Dec. 1st

TELEPHONE SUPPORT GROUPS
Please contact Michelle McKenzie, LMSW at 212-720-3045 for further info.


Research News: ALS Gene C9orf72 Damages
DNA Revealing a New Disease Pathway

The most commonly inherited gene in familial ALS, C9orf72, points to DNA damage causing oxidative stress, according to a new study funded by The ALS Association. The study was published in the journal Neuron and led by principle investigator Fen-Biao Gao, Ph.D. and first author Rodrigo Lopez-Gonzalez, Ph.D. from the Department of Neurology at University of Massachusetts Medical School in Worcester, Mass. Findings from this paper point to DNA damage as a disease pathway of C9orf72-related ALS.

To read the full article please click here.


Join Us for The Annual YPG Fire and Ice Gala

The ALS Association Greater New York Chapter Young Professionals Group (YPG) is gearing up for the annual Fire and Ice Gala on November 18th at LAVO, and there is still time to step up and get involved. “This is such a great opportunity to learn more about ALS, raise awareness, and network with young professionals from the Greater New York area who are interested in raising money for a cure,” ALS Association Greater New York, Young Professionals Group member Josh Michaels said.

Josh, who lost his grandfather to ALS when he was just 3 years old, says, "YPG is a network of people who provide support, and friendship -- all while fighting for a great cause."

"The thing about ALS is it often fades into the background. People donate to cancer, March of Dimes and these larger charities, but people often forget about ALS," Michaels said. "It is important to not forget about diseases that may be rarer, but can still take someone’s life in a matter of months, and even those who survive years, suffer debilitating effects."

Joining the Young Professionals Group and attending events such as the Fire and Ice Gala help to raise awareness amongst those who may be unfamiliar with ALS.

"Even if just 1 out of 100 of your friends can join us at the gala, research ALS, join YPG, or end up advocating for the cause will make a huge difference," Josh said.

Inviting friends outside the network and reaching out has worked in the past for Josh and his friends.

"A lot of my friends didn’t know what ALS was. It isn’t something we talked about. But now a lot of my friends are not only part of the gala, they also find additional ways to help spread awareness," Michaels said.

Buy your ticket today for a fun filled night at the annual Gala and silent auction, and help us continue our fight for a cure. For more information, contact Brett Murphy at bmurphy@als-ny.org.


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!


Sign Up For The National ALS Registry

The National ALS Registry is an important tool researchers can use in the fight against ALS. People living with 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 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.


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 


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