Team Highlight
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Gary Sr.'s Crew at last year's Walk to Defeat ALS.
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We are so happy to welcome back Gary Sr.'s Crew to our New York City Walk this year!
Gary Sr.'s Crew joined us for the first time during last year's NYC Walk to Defeat ALS. The team was formed in memory of Gary Aiello Sr., by his son Gary Anthony. Gary Sr. passed away just shy of his 61st birthday on July 27, 2010 after a three-year battle with ALS. A cherished father, husband, brother, and friend, his memory is honored by his family through various charitable activities, including the Walk to Defeat ALS.
In addition to serving as Team Captain of Gary Sr.'s Crew for the last two years, Gary Anthony has been a Board Member of the ALS Association's Young Professionals Group, which helps raise awareness and funds for patient care and ALS research.
During their first year walking, Gary Sr.'s Crew raised an amazing $16,120.
Welcome back Gary Sr.'s Crew!
Walk Kick-Off At Yankee Stadium
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Stephanie
Class-Polo and her daughter, Chloe Alexis, enjoy the spectacular view of
Yankee Stadium at the this year’s New York Walk Kick-Off.
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The Young Professionals NYC Walk Team
The Young Professionals Group will once again be walking at the New York City Walk to Defeat ALS. They bring together dozens of dedicated and talented people in the Greater New York area who volunteer their time, energy, and skills to contribute to the fight against ALS. Before and after the Walk they will be distributing materials about the YPG and encourage anyone interested to join them in a post-Walk social event. The next YPG meeting will be on May 22nd.
To become involved with the YPG, visit them on Facebook.
Sponsor Highlight
The Greater New York Chapter would like to welcome back Pirate's Booty all natural snacks as a newly designated Silver Sponsor of the 2012 Walks to Defeat ALS! Pirate's Booty has been supporting the Walk Program since 2010 with lots of tasty and healthy snacks for everyone! We are sure that our Walkers will be very excited to see plenty of Pirate's Booty on hand at each of our six Walks this season.
Pirate's Booty came aboard through the stewardship of Eric Berniker, Vice President of Marketing for Pirate Brands. Eric and his family participate in the Westchester Walk with Team “Doing it For Debby”, in memory of his mother Debby who lost her battle with ALS in 2008.
In addition to Pirate's Booty, we would also like to thank the following Silver and Bronze Sponsors for their generous support of the 2012 Walk Program:
We take this May, ALS Awareness Month, to introduce a new feature to the Monthly Update. Many patients and caregivers often have a number of questions about equipment, ranging from basic stationary seats or door hinges, to customized wheelchairs and hydraulic lifts, to high-tech gadgets that assist in the day-to-day care and comfort of a person living with ALS.
Many of you are already familiar with the Chapter's Assistive Technology Specialist Ben Lieman who is the point person for all equipment-related questions. In this edition of the Monthly Update we have the debut of a new column - Ask Ben - that will be an interactive resource for all the questions you have on all types of equipment. We hope you find this forum useful and look forward to your questions.
In the future, Ask Ben will normally only appear in the online version of the Monthly Update or on the website. To ask Ben a question, simply email him at blieman@als-ny.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.
What's the difference between a Wheelchair and a Transport chair?
- George D., Wappingers Falls, NY
This is a very common question. Thank you. The answer is in the wheels, specifically the rear wheels. A standard wheelchair has large rear wheels. This enables someone to maneuver the chair independently if they are able to grab and turn the wheels. With someone pushing the chair, large wheels allow the wheelchair to be tilted back. This is critical to go up or down a small curb, or if necessary to ease someone up or down steps. Finally, larger wheels make for a smoother ride. They absorb the little bumps better than a transport chair. Not much of an issue in a mall, but out on the sidewalk for an extended distance, it can be a bit bumpy.
Transport chairs are generally narrower. This way they can more easily fit through doorways, and even some bathrooms. Size is critical, particularly with smaller New York City apartments. They are also lighter than standard wheelchairs, and therefore lighter and easier to lift, yet cannot be operated by the person seated (unless they can use their legs to push backwards).
I plan on traveling this summer. What should I expect when traveling on an airplane in my wheelchair?
- Dorothy S., Edison, NJ
That's an excellent question, because while many have slight anxiety flying in a plane, that anxiety is increased when dealing with the myriad of logistics confronting ALS patients. Airlines are generally accommodating when it comes to assisting persons using a wheelchair (and other assistive devices), but you should always be sure to give them advance notice.
Here are some helpful tips:
1) If you do not have your own wheelchair, ask for one (in advance), especially if walking long distances, which most airports require a great deal of walking.
2) Even with a manual wheelchair, consider asking for a transporter. The distance from the ticketing counter to your gate and then on the other end from your gate to baggage claim can be extensive. If available, get a vehicle to drive you right to the gate (yes, you still have to go through security). This also saves much effort for the person who would otherwise be pushing the wheelchair.
3) Ask for a seat as close to the entrance/exit as possible. This makes getting on and off the plane easier. Note the business section is usually roomier, as is the first row in coach.
4) Your wheelchair (power or manual) must be left at the point you enter the plane. Be sure to clearly mark it with your contact information for an easy rendezvous at your destination. When giving up your wheelchair, the attendants (if necessary), will assist your transfer to an aisle chair and bring you to your seat. You and only you know how best to be transferred, so tell them so they can smoothly help you into your seat.
Safe travels.
- Ben
QR Code Revealed
Either on your commute to work, at the grocery store, or in a magazine, you've probably seen ads or billboards that have a square box with black & white squiggly marks inside. You may wonder what this means and how to decipher it? For those of you in the know, this box can be more than just a link to a great bargain or to the newest hot video. This can also be a tool in the fight against ALS.
This box can transport a user to Capitol Hill allowing you to communicate with your Member of Congress in mere seconds or it can take you to the lab, making you an integral part in funding cutting-edge ALS research, or it can inform you of the latest technologies helping people with ALS maintain their independence. It can also tell you about the latest upcoming events the Chapter has to offer. This square box, a QR Code, is changing the way we interact and how we communicate, bringing the fight against ALS into the palm of your hand.
So, if you have a smart phone, all you need in order to be transported to these links is the proper smart phone application, and here's how you can get it:
Step One: Download a free app by searching for a “bar code scanner” or “QR code scanner.”
Step Two: Once you have the app, tap it to open it on your smart phone.
Step Three: Simply place your smart phone over our QR code above.
Step Four: Once your phone has read the code, you will be directed to a page approved by the ALS Association Greater New York Chapter.
Step Five: If action is needed, simply follow the prompts.
Donate, Advocate, Stay Informed, by staying in touch. It's safe, secure and quick! Enjoy the inspirational treat above. Look for QR codes at upcoming ALS Greater New York Chapter events, as well as on Facebook and Twitter.
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 dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@als-ny.org.
National ALS Registry
Over one year ago, the National ALS Registry first began
collecting data. In that initial year people living with ALS
throughout the country have registered and in doing so provided
invaluable information on the effects of the disease as well as figures
and statistics which will hopefully pinpoint a cause of ALS, that will
lead to an effective treatment or cure. As we move into a New Year, and hopefully a year full of new discoveries in ALS research, every bit of data collected will directly and positively impact that research.
In addition to gathering key demographic information, the National
ALS Registry recently added several new features, including components
that will help people enroll in clinical trials and locate much needed
services in their communities. A biorepository that collects DNA and
tissue samples also may be added, and more surveys to explore potential
risk factors for ALS are in the works.
The Registry is a powerful tool that has the potential to help find
the cause and treatment for ALS. If you want to learn more about the
Registry, including how to enroll, click on the image of Lou Gehrig
above or go to the ALS Registry website at www.cdc.gov/als.
For more information about the registry go to: www.als-ny.org or call the Chapter office at (212) 619-1400.
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
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 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: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.
Donate
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 Regina Ackley, Senior Director of Operations, at (212) 720-3047 or email ackley@als-ny.org. To mail a donation
to: The ALS Association Greater
New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004.
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 Daryl Cochrane at dcochrane@als-ny.org 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. For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.
ALS Association Greater New York Chapter in Social Media
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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