The National Ataxia Foundation, based in Minneapolis, will host its 66th Annual Ataxia Conference at Planet Hollywood in Las Vegas, Nevada on March 30 – April 1, 2023. Attendees will have the opportunity to learn from world-leading Ataxia clinicians and researchers, network with other families affected by Ataxia, and enjoy social events.
The National Ataxia Foundation, a leading nonprofit organization established to help persons with Ataxia and their families, supports the NFL and NFLPA’s addition of “ataxia” to the NFL’s concussion protocol. Ataxia describes an impairment of coordinated movement resulting from brain or nerve dysfunction. Many symptoms of ataxia mimic the physical effects of excessive drinking, such as slurred speech, imbalance, stumbling, and difficulty with fine motor skills.
The National Ataxia Foundation today announced that the Centre hospitalier de l’Université de Montréal (CHUM) will be the first international clinical site to join the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA).
The National Ataxia Foundation, a leading nonprofit organization established to help persons with Ataxia and their families, today announced plans to partner with SCAsource, an Ataxia research news website. SCAsource offers peer-reviewed articles about research on Ataxias, written in plain language. The strategic partnership will eliminate SCAsource’s administrative costs and offer easy-to-read, scientific articles to NAF’s members.
The National Ataxia Foundation (NAF) announced the hiring of the organization’s first Chief Scientific Officer, Lauren Moore, PhD, following an extensive nationwide search. She will lead NAF’s Ataxia research grant program as well as continue to expand relationships with the growing number of biotech and pharmaceutical companies who are working on developing treatments for Ataxia.
The National Ataxia Foundation (NAF), the Friedreich’s
Ataxia Research Alliance (FARA), and Ataxia UK are pleased to announce the date
for the inaugural International Congress for Ataxia Research (ICAR) to be held at the
Caribe Royale resort in Orlando, Florida, USA on March 15th – 18th, 2022.
The National Ataxia Foundation (NAF) announced today the launch of the NAF Drug Development Collaborative. This pre-competitive pharmaceutical industry consortium has a principal goal of accelerating the development of treatments for Ataxia. The group will address the many shared opportunities and challenges in therapy development for this complex neurological disease.
MEDIA CONTACT
Stephanie Lucas
Communications Director
stephanie@ataxia.org | 763-231-2744
The 66th annual convention of the National Ataxia Foundation was held in Las Vegas last week. If you are a nurse, therapist, or physician reacting to that news with, “What is Ataxia? I’ve never heard of it,” the conference theme is addressed to you: “No one should have to teach their doctor about their disease!” The theme was repeated frequently during the three-day conference by everyone from nationally known neurologists from UCLA and Johns Hopkins to TV personality Bill Nye, who has family members stricken with the genetic disorder but has himself been spared.
Weeks after the dreaded accident happened, the NFL and NFLPA found out that “the outcome in this case is not what was intended when the Protocols were drafted.” The mentioned concussion protocols will keep the players from playing if they are experiencing ataxia. The condition, according to the National Ataxia Foundation, is a rare neurological disease that affects a person’s mobility due to damage to the cerebellum. Poor muscle control leads to a lack of coordination, as well.
The community is invited to attend the Whitinsville Scramble to Cure Ataxia. The event will be held Oct. 24 at the Whitinsville Country Club.
The first annual National Ataxia Foundation Bowl for a Cure is taking place this Sunday. We were joined Thursday, Sept. 22 by several special guests to discuss the importance of the fundraiser, as well as why it is so important to battle ataxia.
Karsen Stephens is a student of the Diesel Program at High Plains Technology Center and also suffers from Ataxia which is a rare neurological disease. Students donated some funds to the cause and began fundraising. Word spread and several local businesses and individuals wanted to contribute. A total of $15,000 was raised for the customized track chair for Stephens.
New preclinical research by Dr. Laura Ranum, a member of NAF’s Medical Research Advisory Board, shows a commonly used Type 2 diabetes drug can improve symptoms in a specific genetic form of ALS and frontotemporal dementia in mice.
Ataxia is a neurological disease that causes balance and motor coordination problems and other symptoms, according to the NAF. There is no cure for Ataxia but the Walk n’ Roll raises money to help research a cure and support those living with the disease.
Have you ever heard of Ataxia? It is a degenerative disease of the nervous system which affects movement in the body.
150,000 people in the U.S. suffer from ataxia. Julie and Ginger speak with WKYC about their story.
“The walk is a walk, obviously, but the roll is because the majority of people who are participating and have ataxia are using either walkers, canes, wheelchairs or scooters. The idea is their caregivers or family members will be walking, and they’ll be rolling.”
Using biochemical and structural studies, they found that in AOA1, aprataxin mutations affect protein stability, how repair proteins bind to DNA, and the rate of the chemical reaction, which is known as catalysis. The team also uncovered a dominant mutation that affects the enzymatic reaction that normally reverses DNA damage.
The National Ataxia Foundation (NAF) is a non-profit organization dedicated to finding a cure for Ataxia. Read our press kit to learn more information about us.
The NFL and the NFL Players Association added "ataxia" to the concussion protocol for players who have experienced head injuries during play. This press kit offers information about concussion-related ataxia.
I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical Read More…
Discovering that you and your family have or are at risk for a rare genetic disease, such as Ataxia, in my case SCA7, can be pretty devastating. Knowing there is Read More…
My name is Jo Ann Kovar. I’m a 60-year-old resident of Ames, Iowa. I moved here 22 years ago from South Louisiana. When I first moved here, I led an Read More…
I had a normal childhood growing up other than I was uncoordinated when it came to playing sports. I was bright, did well in school, and went on to receive Read More…
Hi I’m Brian and this is my story… I was diagnosed in 2010 with Cerebellar Ataxia type 3 (sca3) it’s genetic and another family member has the same disease. My Read More…
Life as I knew it, irrevocably changed fifteen years ago. It wasn’t an immediate event, but a slow, unraveling of my ability to move about normally. The rare, inherited condition Read More…
MEDIA INQUIRIES – CONTACT:
Stephanie Lucas
Communications Director
stephanie@ataxia.org | 763-231-2744
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