NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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We’re excited to share that our CEO, Andrew Rosen, was recently featured on the Mission Matters podcast! In the episode, titled “Raising Awareness and Advancing Read More…
Thank you for 15 Years of Chuck and Duck! We guarantee you will get a kick out of this! For the15th year, Charlton Heights Elementary Read More…
Session focused on the importance of funding research and approving new treatments for rare diseases, especially those with no FDA-approved treatment options like Spinocerebellar Ataxia Read More…
The well-known science educator joins with the National Ataxia Foundation on campaign to build broad understanding of Ataxia, a progressive brain disease that impacts a Read More…
This designation is important to raising awareness of ataxia, ataxia research, and the search for a cure. Minneapolis, MN (September 20, 2024) – The National Read More…
Bill Nye opens up about his personal connection to Ataxia, a progressive hereditary disease. He lost is father to Ataxia and has many family members Read More…
NAF is hiring a full time Community Services Coordinator. This person will play a crucial role in the management and enhancement of the organization’s network Read More…
NAF Awarded a Record Number of Projects in 2024 18 Studies Funded Totaling $845k Funded! We had our most competitive year ever for Ataxia research Read More…
MEDIA CONTACT
Stephanie Lucas
Communications Director
stephanie@ataxia.org | 763-231-2744
To request a press release to be issued by NAF, submit the information using our Press Release Request Form.
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.
Presentation slides about Ataxia and NAF's impact on the Ataxia community.
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.
“For most of his life, every time he tripped on the sidewalk or dropped something on the ground, he was convinced all of this would end—his career as the Science Guy, his ability to play disc golf, his ability to walk, even. In his family is a disease of the nervous system called ataxia, of which there are many types—the Nyes have spinocerebellar ataxia type 27B, or SCA27B, which is hereditary and degenerative….”
“Globally, more than 350 million people live with rare diseases, most of them caused by a misstep hidden within their genes. Some conditions can be caught early and treated—but in parts of Africa where population data and resources are scarce, many people go undiagnosed. Rodriguez is trying to change that by connecting patients with genetic testing and medical support, while gathering key data from those patients and their families…His research is funded by organizations including the La Caixa Foundation in Spain and the National Ataxia Foundation in the United States….”
“Nye’s comments came during a panel about his work and history with ataxia, a rare movement disorder often misdiagnosed as Parkinson’s or multiple sclerosis. In recent years, the science communicator has taken a more outspoken stance in bringing awareness to the disorder that has riddled his family and thousands of others for generations…”
“As a stand-alone condition, “ataxia is a degenerative disease of the nervous system,” explains Andrew Rosen, chief executive officer of the National Ataxia Foundation. There are many types, including cerebellar ataxia, sensory ataxia, vestibular ataxia, Friedreich’s ataxia and more general forms of hereditary ataxias…”
In a Q&A, Nye talks about his family’s history with the neurological disorder and the need to improve diagnosis.
Read ArticleThe beloved ‘Science Guy’ says many of his family members suffer from a rare neurological disorder that their ancestors had in colonial times.
Bill Nye brings awareness to Ataxia and talks about his family’s connection to the disease on CNN.
The National Ataxia Foundation’s third annual Bowl for a Cure fundraiser is taking place Sunday, Sept. 29, and Mark and Leah Minkin were in studio to tell us more about it.
Check out the on-air interview with Regina McKenzie, event organizer, and Kyle Billadeau, VP of Operations and Community Services.
Check out the on-air interview with Lisa Cole, NAF Support Group Leader and event organizer, and Kyle Billadeau, VP of Operations and Community Services.
While most NIL partnerships are centered around talent promoting a brand or consumer product, four student-athletes across the country have instead used their platforms to increase awareness and help raise funds for a rare disease.
The National Ataxia Foundation partnered this semester with Mya Hooten (University of Minnesota Gymnastics, Brandon Garrison (Oklahoma State Basketball), Elise Evans (Stanford Soccer) and J.D. Urso (University of Miami Baseball) to support research and fundraising efforts for the rare neurodegenerative disease.
Friends remember Mike Andersen as quick to help — and quicker to dodge the credit. The U.S. Army veteran and owner of north Orange County-based HVAC company Veteran Air died on Oct. 3 at age 40…Nonprofit founder Cindy Furton De Mint recalled Andersen being proactive when it came to getting involved. She started Brothers on a Quest to raise awareness for ataxia, a condition three out of her sons have. She recalled how Andersen not only showed up to her foundation’s events, but was always a platinum sponsor of the National Ataxia Foundation’s annual walk.
Friends remember Mike Andersen as quick to help — and quicker to dodge the credit. The U.S. Army veteran and owner of north Orange County-based HVAC company Veteran Air died on Oct. 3 at age 40…Nonprofit founder Cindy Furton De Mint recalled Andersen being proactive when it came to getting involved. She started Brothers on a Quest to raise awareness for ataxia, a condition three out of her sons have. She recalled how Andersen not only showed up to her foundation’s events, but was always a platinum sponsor of the National Ataxia Foundation’s annual walk.
Defensive tackle Harrison Phillips has a charitable reputation, and he’s cranked that up a notch heading into the 2023 season…Another eight tickets went to the National Ataxia Foundation, a Twin Cities nonprofit assisting people with the namesake disease that affects the nervous system.
The 2nd annual National Ataxia Foundation Bowl for a Cure is scheduled to take place in Richfield aims to deliver a fun-filled bowling experience for participants of all ages on Saturday, Sept. 23. The event aims to raise awareness and support for those affected by ataxia, a rare neurological disorder affecting coordination, speech and balance.
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.
Hello, my name is Ad, I am 62 years old and I live in the Netherlands. I am married with Marina and we have a daughter Dorith. Since September 2023 Read More…
Hello my name is Sly. I’m 33 years old. Started to show symptoms at age 21, diagnosed at age 25. Fun fact: before I got diagnosed is that I hiked Read More…
I was diagnosed with Gluten Ataxia Disease 2 years ago. I went to every specialist and checked myself into the hospital for tests. I had a brain MRI. Every doctor Read More…
Shortly after returning from a once in a lifetime vacation to Turkey in 2010, at age 58, I began to experience odd neurological symptoms and profound exhaustion. I felt like Read More…
My name is Neyveth Duarte and my dad was officially diagnosed with Ataxia earlier this year. My dad is my hero and he is going through a really hard time Read More…
I grew up in a small & rural town of about 3,500 people in central Minnesota. I was raised in a blue-collar middle class home, with both loving parents and Read More…
MEDIA INQUIRIES – CONTACT
Stephanie Lucas
Communications Director
stephanie@ataxia.org | 763-231-2744
To request a press release to be issued by NAF, submit the information using our Press Release Request Form.
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
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