"To Know the Joy of Giving"
All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
November 2011:Living with Ataxia on WelshFocus
March 2010: Living with Ataxia on Race Online 2012
1/23/10: LivingWithAtaxia Featured on SavantMD.com
8/31/09: LivingWithAtaxia Mentioned on About.com
8/12/09: OrganizedWisdom.com's Favorite Ataxia Community OrganizedWisdom.com.
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BensFriends.org helps 80,000+ rare disease patients every month but until the IRS grants us 501c3 status, we can’t raise money from foundations and corporations. It costs about $2,000 a month to run the 30+ communities. In order to sustain our monthly operating costs, we called for members' donation campaign. Would you help us keep the miracle going at Ben's Friends? If you can, please visit our Donate page on this link.
The word "ataxia", comes from the Greek word, " a taxis" meaning "without order or incoordination". The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system.
Hi all,Well, I met the PT trained in the Balancewear Vests. His name was/is Dr. Kanter and he is based in NYC. He did test me extensively at my home here, and my skeptical brother was present. Dr. Kanter said I am not a candidate for the vests at…Continue
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
The first run of our podcast on genetic disorders with our partner, RareGenomics, was a resounding success! You can listen to a recording of this podcast below, plus some bonus material from Dr. Perlman as she answers more questions about ataxia!
Rare Disease UK is the national alliance for people with rare diseases and all who support them. Members include individual patients and family members, clinicians, health professionals, researchers and industry. Rare Disease UK is campaigning for the development and implementation of a national plan to facilitate research and improve access to services and support for people affected by rare diseases in the UK.
Ben’s Friends is elated to have such a strong partner in its campaign to provide support to every rare disease patient in the UK.
Posted by Marty Williams on December 8, 2013
Posted by PG on December 7, 2013
Posted by Alan Thomas on December 5, 2013
Posted by PG on December 3, 2013
Posted by neta on November 27, 2013
Posted by mary on December 8, 2013
Posted by Alan Thomas on December 4, 2013
Posted by PG on December 7, 2013
Posted by Cicina on December 1, 2013
Posted by Alan Thomas on November 26, 2013
Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to firstname.lastname@example.org.