"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.
A pan-European study: Signs of motor disorders can appear years before disease manifestationThe scientists report these findings in the current online edition of "The Lancet Neurology". This pan-European study could open up new possibilities of…Continue
I was horrified the other day to be told by a neighbour who suffers with Parkinsons and keeps pushing herself so hard she falls asleep at the drop of a hat, that I was pampering my self by resting. My OT has advised that the fatigue I suffer needs…Continue
After Cassie's diagnosis my wife and I were in a state of shock, but after finding this site I feel like I have made so many friends and I would like to thank you all from the bottom of my heart. You are a very special lot dealing with a difficult…Continue
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!
Please click on FIRST TIME USERS and WELCOME! tabs for helpful info, also the Help tab for Links . THANKS!
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.
Help spread the word about our newest communities by sharing on your Facebook wall: Acute Disseminated Encephalomyelitis, ADD, Amyloidosis, Disabilities, Ehlers-Danlos Syndrome, Fabry, Guillain-Barre Syndrome, Lyme Disease, Myositis, Narcolepsy, Nephrotic Syndrome, Sjogren's Syndrome, Traumatic Brain Injury, Von Willebrand's Disease.
Posted by Jeannie Ball on May 18, 2013
Posted by butterflyflyaway on May 17, 2013
Posted by Cher Macdonald on May 20, 2013
Posted by Punk on May 22, 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 email@example.com.