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


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December 2016

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Make Your End of the Year Gifts Really Count: Join the Fight against ALS

The holiday season and the end of the year is upon us. As the year wraps up and you are looking to make charitable donations Joe Brown wants you to consider giving to the ALS Association Greater New York Chapter. Joe’s wife Verna was diagnosed with ALS during last year’s holiday season in December of 2015, and since then he has seen firsthand just how devastating this disease is.

Joe and Verna Brown.

“The ALS Association provided my wife with a power wheelchair as long as she needs it. Her ability to speak has been greatly reduced and, being a former English teacher, that is really difficult for her, so we are also on the waiting list for an eye tracking device,” Brown said.

These services are available free of charge to Verna and Joe because of your generous donations.

“This holiday would be a great time to make a gift to the ALS Association Greater New York Chapter, so they can continue their care and research,” Joe Brown said. “It would be a wonderful gift for someone who is suffering from the disease who could greatly benefit from the research, and medical services this gift would provide.”

Joe and Verna have been married for 54 years. Verna now lives in a nursing home, and Joe said adjusting to being home alone has been difficult. He credits the Chapter’s support groups with helping keep his spirits up.

“The ALS Association has been a bedrock, and so supportive both emotionally, and when it comes to medical services. Anyone dealing with ALS knows just how important the emotional help can be,” Brown said.
More than 750 PALS and families rely on the Chapter, and rely on your funds to help fuel their fight.

“My wife is an inspiration. She is amazing and she is still the social butterfly of the nursing home and a fighter. She has her down days but we still have our laughs and she’s fighting,” Brown said.

Join in the fight alongside Verna and Joe Brown by donating to the The ALS Association Greater New York Chapter and help us continue to provide compassionate care, advocate for patients and families, and fund the research that will hopefully lead to an effective treatment and cure for ALS.
“It is one of the most devastating of all diseases, because the body betrays the individual, but the mind continues to work,” Brown said. “So please don’t give up on the fight because we aren’t. Let’s find a cure so no one else has to suffer with ALS.”

December Support Groups

NORTHERN NJ
Thursday, December 1st - 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: Open Discussion/Holiday Celebration
Next support group meets: Jan. 5th

NASSAU COUNTY, NY
Sunday, December 4th - 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: Open Discussion/Holiday Celebration
Next month’s support group will not meet due to Holiday New Year’s Day on Jan. 1st.

LOWER HUDSON VALLEY, NY
Tuesday, December 6th - 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: Open Discussion/Holiday Celebration
Next support group meets: Jan. 3rd

WESTCHESTER, NY
Tuesday, December 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/Holiday Celebration
Next support group meets: Jan. 10th

SUFFOLK COUNTY, NY
Tuesday, December 13th- 6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Mead Road
East Setauket, NY 11733
Contacts: Theresa Imperato RN
(516) 946-5467
Cindy Keyser-Posner LMSW
(631) 416-2767
Topic: Open Discussion/Holiday Celebration
Next support group meets: Jan. 3rd

CENTRAL NJ
Saturday, December 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: Open Discussion/Holiday Celebration
Next support group meets: Jan. 21st

MANHATTAN, NY
Tuesday, December 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 Dept., 5th Floor Conf. Room
Contact: Jody Wiesel PhD (917) 699-9751
Topic: Open Discussion/Holiday Celebration
Next support group meets: Jan. 17th

TELEPHONE SUPPORT GROUPS

Patient group: Every Wednesday
from 2:30 to 3:30 pm
Caregivers group: Every Wednesday
from 4 to 5 pm
Topic: Open Discussions
Please contact Michelle McKenzie LMSW
at (212) 720-3045 for further info.

 


Research News: New UBQLN2 ALS Mouse
Model Replicates Many Key Disease Features

An ALS Association-funded research team led by Mervyn Monteiro, Ph.D., Professor at the University of Maryland School of Medicine in Baltimore, has developed a new mouse model that faithfully replicates many aspects of the disease, including the formation of characteristic aggregates of an ALS-linked protein called TDP-43. The new model was created by inserting a mutant ubiquilin 2 (UBQLN2) gene, an important contributor to protein recycling, according to a new study published this week in the Proceedings of the National Academy of Sciences. The new model will help decipher how mutations in UBQLN2 cause ALS in people, and more generally how defects in protein recycling contribute to neurodegeneration.

To read the full article please click here.


Matching Gift Programs

Does your company have a matching gift program? Many employers sponsor matching gift programs and will match any charitable contributions or volunteer hours made by their employees. If you’d like to set-up a matching gift to the Chapter, talk to your HR Dept or contact Jeanne Traugot at jtraugot@als-ny.org for more information.


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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