The Rochester Ataxia Foundation is committed to raising the dollars necessary to engage research communities in seeking a better understanding of causes, and ultimately, a cure for, inherited ataxia. RAF continues to support quality of life for individuals and families impacted by ataxia by advocating for improved diagnosis, care and treatment for individuals in the Rochester area and in the Northeast United States
WHAT IS ATAXIA?
"Ataxia" comes from the Greek work ataxis which means "without order." To a person with ataxia this can mean a wide range of symptoms and challenges - ranging from a loss of coordination to life-threatening conditions. In some cases, ataxia can be hereditary; in some cases it can be sporadic. There is little in the way of research when it comes to hereditary ataxia due to lack of funding.
WHY IS THIS SO IMPORTANT?
An estimated 150, 000 people in the United States are affected by inherited ataxia, a genetic disease with multiple types, each of which could be considered a disease in its own right. They all have in common the loss of coordination. Symptoms and age of onset can vary depending on the type of inherited ataxia and can differ even among members of the same family.
Individuals with inherited ataxias have problems with parts of their nervous system that control movement and balance. The first onset of symptoms can include loss of balance and coordination of hand, arms, and legs movement, along with slurring of speech. Progression of the disease can make walking more difficult. Impaired coordination of body limbs makes daily tasks which require fine motor skills. Advanced stages will usually require the use of adapted devices such as a cane, walker, or a wheelchair.
To date there is no known cure for inherited ataxia. The degenerative nature of the disease is progressive and can occur over a number of years. How severe the disability will become and whether the disease will be fatal depends on the type of inherited ataxia, age of onset of symptoms and other factors which at this time are not well understood by the medical community.
This is why the work of the Rochester Ataxia Foundation is so vitally important. With your support, we will get there together!
We focus on: Health
Where we are: Genesee, Livingston, Monroe, Ontario, Orleans, Seneca, Wayne, Wyoming, Yates
Back to Not-For-Profits