Many organizations and federation’s contribute to the advancement of our awareness, events and information with a mutual desire to find a cure for our diseases and ways to cope with the affects of their disease with daily Tips for Coping.
Rare diseases Magazine UK
Eurodis , Paris France
Cambridge rare diseases network UK
Genetic Alliance UK
SAC 3 – Spino Cerebellar Ataxia
Find A Cure UK
National Ataxia Foundation – USA
EuroAtaxia / UK and Europe
FARA USA / FEDES Spain Europe
The wider Ataxia and rare disease community are supporters of our Ataxia efforts on behalf of the Ataxia Care Project and Ataxia research. They are all tirelessly putting the spotlight on Ataxia and making the world aware just how rare this disease is . We are all raising awareness about Ataxia and looking for a cure.
Ataxia Care Project has supporters all over the world and targets the 1.7 million people living with Ataxia.
Ataxia Tips for Daily Living – Exercise – use it or loose it !
Diabetes – medications, insulin checks, only 0% sugar products
* Avoid using Metoforim diabetes pills. ( diarrhea side affects )
Obesity – nutrition / 0 carbohydrates / vitamin E supplement / fitness / exercise of any kind . * Use a sitting foot pedal rotation device. YouTube exercises for disability!
Wound care – nivea and sudo creams , open wounds covered – ( avoid scratching )
Foot & Leg care – Dry & Clean is our motto . * Use only your towels
Clothing- loosely fitted clothes with rubber bands comfortable shoes / orthopedic socks. No buttons, zippers, belts or clasps
Chocking / Swallowing- use a towel or bibs ( to protect clothing ) / use straws
Urinating – stay away from carbonate or fizzy drinks . ( try orthopedic socks ).
A Japanese study has determined that orthopedic socks can relieve water retention in your lower leg caves.
25 years Ataxia diet – UCLA Dr Perlman Neurology Department ( YouTube webinar )
Ataxia associated with glucose or vitamin E deficiency should be monitored by a nutritional specialist or your Neurologist