What is #GivingTuesday?
#GivingTuesday refers to the Tuesday after Thanksgiving, which was created as a national day of giving to kick off the giving season. #GivingTuesday started in 2012 as a response to commercialization and consumerism in the post-Thanksgiving season.
Join us Tuesday, December 2, 2014, as charities, families, businesses, community centers, and students around the world come together for one common purpose: to celebrate
generosity and the spirit of giving.
It’s simple! Click here and donate to The ALS Association Greater New York Chapter and then post and tweet using #GivingTuesday and tell everyone about the importance of giving! Remember to tag us on Facebook and Twitter when you do!
Ask Ben: How To Widen A Bathroom
Door For Wheelchair Access?
Our bathroom door is too narrow for my mother to get in with her wheelchair. I heard you speak at a support group, where you mentioned something that widens a doorway. What was it?
- Joanna, Westchester, NY
An offset hinge. This is a simple solution, that can add 2" to the width of a doorway (it doesn't have to be the bathroom). When a doorway is built, you get a matching door to fit. A 26" door fits in a 26" wide doorway (adding a 1/4" for spacing). So a 25" wide wheelchair will fit through this 26" wide doorway, right? Wrong. The measurement you really are looking for is not the width of the doorway, but the doorway clearance. The unblocked space of the doorway. When you open a door, the edge of the door, right along the hinge, is blocking part of the doorway. A door edge can take up 2". So in the example provided, a 24" wide wheelchair might just scrape through, but a 25" wide wheelchair will not make it.
An offset hinge replaces the existing hinge. Same holes, same location, same purpose, swinging the door in and out of the doorframe but the unique design of an offset hinge is that it opens the door past the doorframe, not inside the doorframe. You gain 2" of clearance, and have access to the entire width of the doorway.
There are only two conditions that need to be taken into account when considering an offset hinge. First, there needs to be 2-3" from the existing hinge to the next wall. If the existing doorway is right up against the wall, there is no room to place the offset hinge. Second, an offset hinged door will swing 2" further into the room. If there is open space in the room, the larger door swing is unimpeded. But if the current door swings very close to a sink or other fixed position item in the room (less than 2"), using an offset hinge will cause the door to bump into that object, and not open the doorway fully. It may still open the doorway more than a standard hinge, but you would have to measure this out in advance.
Offset hinges may be found in some hardware stores, though many will not know what you are referring to. Large warehouse chain stores have them on-line, as do several on-line hardware websites. Search for offset hinge or swing clear hinge.
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 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.
Advances in ALS and FTD Genetics Workshop:
Report from the Society for Neuroscience Meeting
The ALS Association booth at this year’s Society for Neuroscience conference in Washington, D.C.
Data, and lots of it, is increasingly seen as critical to finding new treatments for ALS. Data from genes, from tissue samples, and from clinic visits—all of it may hold important clues to what causes amyotrophic lateral sclerosis (ALS), how it progresses, and what determines the onset and development of the disease.
Understanding how best to use and share the emerging mountain of ALS data was the theme of The ALS Association-sponsored Advances in ALS and FTD (frontotemporal dementia) Genetics Workshop, held recently in Washington, DC, in conjunction with the annual meeting of the Society for Neuroscience, the largest gathering of neuroscientists in the world. The meeting was co-sponsored by the National Institute of Neurological Disorders and Stroke, and the Association for Frontotemporal Degeneration.
A key goal of the meeting was to develop partnerships and collaborations to increase data sharing. Data sharing has become even more important with the discovery of the C9orf72 gene, which can cause both ALS and FTD. Researchers who specialize in ALS have a lot to learn from those who specialize in FTD and vice versa.
Data sharing is especially important in the hunt for new genes that cause ALS. Combing the genome for genes that contribute to ALS risk depends on having thousands of samples, so that a weak but important genetic “signal” can rise above the background “noise.” Much of the day’s discussion was devoted to discussing how groups currently seeking new ALS genes can work together, and how clinicians can speed their efforts, through careful documentation at each clinic visit of important patient variables such as strength and respiratory function. When such data from hundreds or thousands of people with ALS is combined, it can help researchers better understand how specific genes contribute to disease progression or protection.
The ALS Association is supporting multiple gene discovery networks and encouraging the sharing of data among them, efforts that have begun to bear fruit in the discovery of new ALS risk genes. Further work will be needed to make even bigger strides in understanding ALS. That work is being carried out by national and international consortia, including Project MinE, the 1,000 Exomes Project, the Biogen Idec Genetics Consortium, the European Early-Onset Dementia Consortium, the NIA-European Collaboration, the Genetic FTD Initiative, and the Mayo Clinic.
“Our goal from this workshop was to maximize data sharing and collaboration,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A. “It was especially important to hear from the scientists on what they need most to make those collaborations productive. We did that and will now continue to accelerate this effort both through our funding and our ability to bring different groups together.”
There's more... To read the full article, please click here.
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.
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 next general meeting of the Young Professionals Group please email firstname.lastname@example.org.
For information about the ALS Association's Young Professionals Group, please click here.
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 John Nolan at (212) 720-3051 or email@example.com.
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 click here to learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email: firstname.lastname@example.org.
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 or contact John Nolan at (212) 720-3051 or email@example.com. 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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