November is Caregivers Month - a time to be thankful for the caregivers in our lives and to remember those that continue to struggle with everyday finances while remaining the strong support in a family affected by ALS. We all know how important caregivers are in the lives of PALS; they are the dedicated force making the life of PALS a bit more comfortable.
Please take this time to show your thanks for the caregivers in your life by making a donation to help another. Your gift, will help the Chapter provide supportive services including counseling home visits to our Chapter's caregivers and will speak volumes to show our caregivers they are not in this alone. Together, we can take care of them.
To donate or more info, contact Loren Domilici, Development Manager at (212) 720-3060
Saluting Our Veterans
Every November 11th our nation commemorates Veterans Day, honoring those have served in our country's armed forces. This is especially meaningful to the ALS community, as those who've worn a military uniform are twice more likely to develop ALS than civilians.While the exact cause remains unknown, the U.S. Department of Veterans Affairs offers an array of benefits those living with ALS who've fought for our country.
To honor those veterans with ALS, living and departed, The ALS Association created the Wall of Honor as a tribute. If you are a veteran, please join other area veterans and tell your story.
If you are a loved one of a veteran, please share their story on the Wall of Honor. Here are just some of the outstanding veterans of New York and New Jersey on the Wall of Honor:
Carol Costanza-Edwards -- Teaneck, NJ
Women's Army Corp (WAC), 1959-1961
Served at Fort Carson, just outside Colorado Springs, Colorado. She died of ALS just this past July, survived by four children and several grandchildren.
Leonard Gagliardi -- Brooklyn, NY
Served as a Naval Medic during World War II in North Africa. After returning stateside he got married, moved to Freeport, NY and raised six children. He worked at the Daily News. His brother also died of ALS.
Luis Journett -- Union City, NJ
Stationed in Vietnam, he was a decorated sharpshooter in the Airbourne Division. After his tour of duty he returned to New Jersey and was married for 43 years, raising five children and having 16 grandchildren. He died in the Fall of 2011 after a brief battle with ALS.
Fred Ruprecht -- Wantagh, NY
Served as an Engineman on the USS Purdy during the Korean War. Upon returning to civilian life he became a New York City Fire Fighter and raised four children with his childhood sweetheart. He was diagnosed with ALS just before Christmas 2006 at the age of 74, but continued to care for his wife who was suffering with Alzheimers. He died less than a year following diagnosis.
Andre Williams -- Far Rockaway, NY
Enlisted and was subsequently deployed to a field artillery unit in Germany testing tanks and cannons. Following his service, he worked for over 20 years as a plumber and plumbing instructor. Andre is an ALS Advocate, particularly on issues related to veterans.
To learn more about Veterans' benefits for those living with ALS or to tell your ALS story as a veteran (or posthumously by a loved one) on the Wall of Honor, please visit www.alsa.org/veterans.
The Greater New York Chapter salutes our troops and thanks them for their service to our country.
My husband has ALS and is no longer able to transfer into a car comfortably. Now our family can no longer take short trips together. I was wondering about the possibility of getting a wheelchair accessible van. Can you tell me how to best go about that?
- Karen, Mahwah, NJ
The purchase of a new or even used adapted vehicle can be costly, so there are a number of things to carefully evaluate when considering obtaining a wheelchair accessible vehicle.
One option is the outright purchase of an adapted vehicle. You can find adapted vehicles listed online or in the newspaper, or at some dealerships. But you need to be knowledgeable about vehicles. An adapted vehicle has the standard issues of car ownership…brakes, mileage, engine, tires, and also the added issue of a working wheelchair ramp. The ramp itself can be $3,000-$6,000 to repair. The cost is higher, if the ramp needs to be replaced. You can find used adapted vehicles starting at $5,000. (Buyer beware!) At a dealership, they could potentially offer a few months guarantee, which could afford you some recourse if you run into problems right away. New adapted vehicles can run up to $50-$60,000. This option is unfortunately cost prohibitive for many families, however, if you are able, you will then have constant access to a vehicle to come and go as needed.
Another option you might want to consider is a rental. Renting an accessible vehicle can be done just to get away for a day, or combine a trip to a restaurant or visit with a friend following a clinic visit. I encourage families to take advantage of this option at least once, if only to determine if it is something you would be comfortable doing again in the future.
In New York and New Jersey, there are a few companies that rent accessible vans, and the cost is not much higher than renting a car. Because there are only a few of these companies, you may have to drive to pick up the vehicle, and then drive it home to transfer the person with ALS into it. It may differ from having your own car, and there are some per trip costs, but being able to ‘get out’ is important. Each family must decide if it is worth it.
Since accessible vehicles are not as readily available as standard cars, advance planning is recommended. Even if you don’t need a vehicle at this time, contact the companies in your area, to know where they are located, and what the rental process is in advance. It will help be prepared if a need or opportunity comes up unexpectedly. For a list of companies that rent accessible vehicles in the New York/New Jersey area, please contact me.
Lastly, while our loan program does have a few wheelchair accessible vehicles, there is great demand and short supply, and therefore the waiting list to receive such a van can be quite lengthy, and could be as long as a year.
Regardless of which option is right for you and your family, having access to an adapted vehicle provides an extended range of involvement and independence.
Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at firstname.lastname@example.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.
The Walks to Defeat ALS Finish
Strong in the Hudson Valley
The Hudson Valley Walk on October 20th was the final Walk of the 2013 season and it was by all accounts spectacular! Approximately 1,500 Walkers attended the Fifth Annual Event at the Walkway Over the Hudson and helped to raise over $150,000 to support patient services and programs in the Hudson Valley area. Families, friends and loved ones joined together for a day filled with great music, food and fun for everyone, all while raising awareness and funds to help defeat ALS!
While the Walks may be over, it’s not too late to donate! Please visit www.alswalks.org to make a contribution in support of our Walk Teams. Stay tuned next month for a final update on the 2013 Walk to Defeat ALS Season!
YPG Masquerade Event Raises $5K For ALS
The ALS Association’s Young Professional Group hosted their annual Fall Fundraiser on October 25th at Maxwell’s Bar & Restaurant in TriBeCa, NYC. This masquerade-themed event was attended by nearly 90 people including YPG members and their friends and family. Everyone came dressed in masks and costumes for a great night that raised almost $5,000 in support of the Chapter’s research and patient services programs. Thank you to those who came out and made this event a big success!
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 email@example.com. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or firstname.lastname@example.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.
The next general meeting of the Young Professionals Group will be Nov. 12 at 252 West 37th Street, 17th Floor at 6:30 PM. For information please email email@example.com.
For information about the ALS Association's Young Professionals Group, please click here or contact Loren Domilici at firstname.lastname@example.org or (212) 720-3060.
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
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.
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.
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