With 2012 now a memory, we would like to take this time to say THANK YOU to all of our Chapter supporters. Your donations have enabled us to provide services to almost 700 PALS and their families in the Greater New York area last year. Your generosity also funded a number of cutting-edge ALS research projects that may move us another step closer toward a cure for ALS. We couldn't have done it without you and we are extremely grateful!
But did you know your gift could be doubled this year? This new calendar year is a great time to check if your company matches your charitable donations. Many companies have a corporate matching program that allows you to donate to The ALS Association Greater New York Chapter and after filling out a simple form, that donation is matched by your company. If you don't know your company's policy, your HR department should have all the answers you need!
It's never too early to start to plan your financial gifts for the year. Your giving can provide our PALS and their families with the most comprehensive support throughout the year. Help us double the impact today!
New Year's Resolutions
The ball in Times Square has dropped, Auld Lang Syne has been sung, and Baby New Year has ushered in 2013. And as is tradition with so many cultures around the world, now is the time to make New Year's resolutions. Here are 12 resolutions you can do (one per month) to help fight ALS all year round:
Donate - Make a gift to The ALS Association Greater New York Chapter and remember to check if your company offers matching gifts. Click here to donate.
Volunteer - Help people living with ALS and their caregivers with simple tasks to improve their lives. You can also volunteer at one of the several events the Chapter holds each year, including the Walk to Defeat ALS.
Advocate - Join us in Washington, DC in May and advocate about ALS related issues to your Senators and Member of Congress. If you can't make it to Washington, sign a letter to your representatives showing your support for more ALS government funding and the ease of obstacles to research. Click here for more information on becoming an ALS Advocate.
Write a Letter - Write a Letter to the Editor of your local newspaper and raise awareness about ALS in your community. Or you could even blog your story. Share it with us and we could post it on the Chapter blog as well. Tell your story from the heart and get it published.
Social Media - If you're on Facebook or Twitter, join one of the numerous platforms the Chapter provides and stay connected between Monthly Updates. There's a community of over 5,600 on Facebook & Twitter throughout the region. Be a part of it.
Walk - Walk in the ALS Association's signature fundraising event - the Walk to Defeat ALS. There are six Walks throughout the region. Find one near you. Every step makes a difference. Click here for information on our Walks to Defeat ALS.
Community Events - Plan an event in your community to raise funds and awareness for ALS. Whether it is 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. If you are athletic and already participate in an existing event (i.e. NYC Marathon, 5 Borough Bike Tour, half marathon, local 10K, etc...), you can be a part of Team ALS. Help raise funds and awareness for research & patient services through any event that you participate in or organize. We have a team of people here to support you. Email Kristen Cocoman at Cocoman@als-ny.org for more information.
Financial Planning - Include the ALS Association Greater New York Chapter in your will, donate securities to the Chapter, or take advantage of our planned giving program. There are also a number of other creative and financially sound ways to make a gift than simply writing a check. Check into it by clicking here.
Register - If you're living with ALS, you should register with the National ALS Registry and complete the surveys so the Centers for Disease Control & Prevention can better understand the nature of ALS and bring us one step closer to a cure. If you know someone living with ALS, help them to register if they need it. Click here for the National ALS Registry.
Take in a Game - Throughout the summer, the ALS Association teams up with Minor League Baseball to raise awareness for ALS throughout the country. Look for an ALS Awareness Day with the MiLB team nearest you and head out to the ballgame. ALSA is an official Charity Partner of Minor League Baseball.
Wear it and Share it - You can raise awareness for ALS through fashion or on your car. Purchase a stylish ALS awareness bracelet or don a bumper magnet for your car and raise awareness for ALS with those you pass by every day. Click here to purchase a car magnet or a bracelet.
Talk about it - Whether you're living with ALS or know someone who is or has, tell your story to your friends, colleagues, fellow congregants and make your ALS story heard. The more people know about ALS, the more understanding we can generate and the more hope we can provide. It can be very painful to talk about, but your voice is needed to help spread the word.
If you do all twelve resolutions, or even just one, you will make a difference. If you need any help along the way, the staff of the ALS Association Greater New York Chapter is here to assist you and get you started. Call us at (212) 619-1400 or email firstname.lastname@example.org and we'd be happy to discuss ways for you to get involved in the fight against ALS. Happy New Year!
January Support Groups
Topic for all groups this month will be Holiday Celebration!
HUDSON VALLEY, NY
January meeting cancelled. Will meet in February.
Contact: Helen Mayer, RN,
SADDLE BROOK / NORTHERN NJ
Thursday, January 3rd
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
Topic: Open Discussion
NASSAU COUNTY, NY
Sunday, January 6th
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN,
(516) 946-5467 & Jody Wiesel, PhD
Topic: To be announced.
SUFFOLK COUNTY, NY
Tuesday, January 8th
6 pm to 8 pm
Stony Brook University
Dept. of Neurology
179 North Belle Meade Rd,
Contact: Theresa Imperato, RN, (516) 946-5467
Topic: Open Discussion
Tuesday, January 15th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
Topic: New information about Medicare & Medicaid
Speaker: Julia M. Greenberg, Attorney
NEW BRUNSWICK / CENTRAL NJ
Saturday, January 19th
1 pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg,
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
Topic: A PALS Research update with Dorothy Smith.
TELEPHONE SUPPORT GROUPS
Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
For more information about our Support Groups go to the Chapter website: www.als-ny.org, Patient Services section or call (212) 619-1400.
My husband was recently diagnosed with ALS. We are considering a stair glide to go up and down the stairs in our home. How long do you think he will be able to use it?
- Arlene, Westchester County
The best answer is... it depends. A stair glide provides access to another floor, when walking up or down is no longer safe or possible. Safe stair glide use depends on the rider's ability to sit independently and maintain upper body balance. A seat back, arm rest, foot plate, and seat belt all provide assistance in this process. If the user finds themselves leaning over an armrest unable to sit upright, or requires a tilted seat or harness in order to do so, then a stair glide seat may not provide enough support. Some caregivers will walk up or down the steps, alongside the rider, to support them. However this is not recommended and it could be potentially unsafe for both individuals.
As with many products that provide assistance, it is important to use them safely and consider other options when necessary. We unfortunately do not accept stair glides in our warehouse, but we can provide you a list of dealers in the New York/New Jersey area. We recommend using a dealer to provide the best installation, as well as a warrantee. You could also post a request on our Chapter Facebook page and get feedback from others in our area on what’s worked best.
To ask Ben a question, simply email him at email@example.com or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.
ALS Advocacy – New Year, New Lines, New Faces
With the results of the 2012 elections now in, it’s important to look ahead to our Chapter’s advocacy efforts this New Year. Additionally, many boundary lines for Congressional and state legislative races also shifted, so some of you may now be in new districts or have a newly elected official representing you in Washington, DC or Albany.
As we look ahead to fight for more funding for ALS research, for better care for those living with ALS and those caring for patients, and for streamlined efforts in the research pipeline, we must first know who represents us. Go here -- votesmart.org to see who represents you. Once you find out, sign up to be an ALS Advocate and together we can move our government toward a better response to end this disease.
National ALS Registry
It's been two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.
If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.
For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.
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 firstname.lastname@example.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or email@example.com.
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
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 call Christine Dunn at (212) 720-3044 or email: firstname.lastname@example.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: email@example.com for New Jersey.
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. Call Loren Domilici, Development Manager, at
(212) 720-3060 or email firstname.lastname@example.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.
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 Daryl Cochrane at email@example.com or (212) 720-3051.
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.
Stay tuned for details on the next YPG event.
For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.
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.
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