"To Know the Joy of Giving"
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for Wales RareDisease Day reception 2014
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Ben Munoz & Ben's Friends were featured in Forbes over the weekend! Thanks to the Members who talked to the author, Sarah McKinney.
"We're In This Together: Stories & Tips from Patients with Rare Diseases" can be found HERE.
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.
The randomized controlled clinical trial investigated the effectiveness of varenicline (Chantix) in treating spinocerebellar ataxia type 3, or SCA3. The findings were published online earlier this month in Neurology, the journal of the American…Continue
Was just wondering if anyone was taking any drugs that helped with their symptoms.I have SCA1 and my neurologist suggested Pregabalin (Lyrica). Im on a very low dose but it does seem to help smooth out my movements.I take all the vitamins, co-q 10…Continue
This is what I ride 3 times a week I live near a bike trail I go 20 miles each time. It is a lot of fun and good for health. I am 72 donot take any drugs just vitamins and minerals my blood pressure is 130 over 78 with a pulse of 60. It alsogives…Continue
Hello everyone I have not posted anything in a while, so just a wee update. I reckon Cassie has had sca2 for about 3 to 4 years and was diagnosed when she was 21. Her way of dealing with this is to have as little information as possible about sca…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.
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