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National Ataxia Foundation

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National Ataxia Foundation

Press Releases

November 30, 2022

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.

October 13, 2022

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.

August 15, 2022

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).

May 27, 2022

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.

December 15, 2021

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.

Lauren Moore

November 18, 2020

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.

 

ICAR

November 5, 2020

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.

March 6, 2019

The National Ataxia Foundation (NAF) Board of Directors and staff announced their new Executive Director, Andrew Rosen, following a nationwide search conducted by a committee of the Board of Directors. He will lead NAF’s efforts in improving the lives of persons affected by Ataxia through support, education, and research.

Andrew Rosen

November 16, 2018

Non-profit based in Minneapolis will accept resumes from qualified candidates until the position is filled, with submissions to be considered in the first screening due by December 21, 2018. 

Sept 25, 2018

National Ataxia Foundation celebrates International Ataxia Awareness Day (IAAD) with various outreach strategies to bring awareness to this rare disease. 

International Ataxia Awareness Day. September 25

In the News

News Medical, October 2022

In this interview, we speak to Dr. Lauren Moore from the National Ataxia Foundation about ataxia and how the NFL is helping to raise awareness for this condition.

Star Tribune, October 2022

Ataxia, an obscure neurological term with deep roots in Minnesota, was thrust into the NFL’s concussion protocol lexicon last week and has impacted this week’s Vikings game in Miami.

USA Today, October 2022

The National Ataxia Foundation says ataxia symptoms are similar to being drunk, in that people have problems using their extremities,…

Enstarz, October 2022

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.

Community Advocate, October 2022

The community is invited to attend the Whitinsville Scramble to Cure Ataxia. The event will be held Oct. 24 at the Whitinsville Country Club.

WDJT - Milwaukee (CBS Affiliate), September 2022

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.

Woodward News, September 2022

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.

UF Health, July 2020

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.

News Herald, Sept 2019

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.

Fox 2 Now, Sept 2018

Have you ever heard of Ataxia? It is a degenerative disease of the nervous system which affects movement in the body.

WKYC, Aug 2018

150,000 people in the U.S. suffer from ataxia. Julie and Ginger speak with WKYC about their story.

Cleveland.com, Aug 2018

“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.” 

NIH.gov, Aug 2018

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.

Press Kits

Member Stories

Bud Manley

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…

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Brian Oliveira

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…

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Kathryn Smith-Hanssen

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…

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Shawn Andrus

My name is Shawn Andrus, many call me either, husband, father, son, uncle, and one calls me Godfather. I was diagnosed officially with Ataxia in January of 2020 at 48 Read More…

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Pat Clementz-Peterson

The Michael and Patricia Clementz-Peterson Family Fund has supported NAF in many ways throughout the years. Since 2017, they generously pledge to match donations made to NAF’s Summer Match Challenge. Read More…

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Debbie Levi

Collective Strength During my late thirties my loss of balance was apparent. That was over 35 years ago. By my early forties, I was diagnosed with Cerebellar Ataxia. Prior to Read More…

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