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What to Do After Receiving an Ataxia Diagnosis

Empower yourself with the knowledge to live better with Ataxia.

Receiving a diagnosis of Ataxia can be overwhelming. Many people have reached out to us after receiving their diagnosis, frustrated because they were told there was “nothing you can do.” That is simply not true! There are things that you can do to take an active role in managing your health. NAF is committed to providing the tools you need to live better with Ataxia. We have lots of resources to get you started on your journey and we’ll be here with you, every step of the way.

First things first, sign up as a member of NAF! Our members receive early access to our monthly webinars and stay up-to-date on the latest in Ataxia treatment development. It’s free and you can unsubscribe at any time.

Find an Ataxia Specialist

Although Ataxia is a rare disease, there are many knowledgeable experts who are committed to providing you with exceptional care. Ataxia specialists work to improve your quality of life and address your symptoms caused by Ataxia. Visiting an Ataxia Center or neurologist who is familiar with movement disorders is recommended. An individualized plan is developed that coordinates care for neurology, speech and language therapy, occupational therapy, physical therapy, and other specialties. 

NAF maintains a list of Ataxia Centers, Movement Disorder Clinics, and neurologists who have experience treating Ataxia patients. Visiting an Ataxia Center is best because they have entire teams of people from different specialties who are all devoted to Ataxia diagnosis and management. They usually offer a multidisciplinary approach and coordinate your various appointments to the same day. However, not everyone lives close enough to go to an Ataxia clinic. In those instances, try to find a neurologist who has experience with Ataxia patients. View our full list of neurologists and specialty clinics.

Get the Support You Need

Ataxia is a rare disease. Because of that, many people in your life may not have heard of it before. There is a large network of people available to you who know how you feel and have been in your shoes. 

Find a Local Support Group

NAF coordinates support groups that are run by local volunteers who are affected by Ataxia themselves. Some of our Support Group Leaders have Ataxia and others have loved ones who are affected. The groups are used as a way to socialize with others who understand and stay informed about the latest Ataxia research and treatment development.

Check out our support group map to find contact information for the leader of a group near you or check out our events calendar to find a meeting on the schedule.

Connect Online

In-person meetings aren’t your thing? That’s ok! We have virtual options too! Many of our support groups meet virtually with Zoom. Check our events calendar for virtual meetings and feel free to join one from ANY area!

Another great way to connect or ask for advice from other people diagnosed with Ataxia is on our Facebook Support Group. The group has more than 11,000 members and conversations are happening daily. Members discuss many different topics, share tips, vent, and relate to one another. Even if you’re a bit shy, joining to watch the conversations between others can help you learn and feel more connected. The group is moderated. Only group members can see the content and only people who are affected by Ataxia are allowed to join.

Learn About Ataxia

With any chronic health condition, learning can help a person better advocate for their needs. That is even more true when you are diagnosed with a rare disease, such as Ataxia. Scientific research is evolving rapidly. Part of NAF’s mission is to accelerate Ataxia treatment development. We work closely with clinicians, researchers, and treatment developers to make sure that we have the most accurate and up-to-date educational materials available. Here are some different ways to learn more:

Ataxia Webinars

We host webinars on a variety of topics, presented by Ataxia industry experts. Our webinars are free to attend live and recordings are available on our webinars page. Members receive information about each webinar that is scheduled – so be sure to sign up for our email list. One of our most popular webinar series is Ask the Ataxia Expert. At these sessions, a world-renowned expert is available to answer any questions related to Ataxia. 

Check out few of our highest-attended past webinars:

Annual Ataxia Conference

NAF’s Annual Ataxia Conference (AAC) is an annual gathering where attendees meet and learn from world-leading Ataxia researchers and clinicians. It is a social gathering and educational experience for those diagnosed with Ataxia. We have virtual and in-person options to attend AAC. Choose what works best for you! We understand that registration and travel costs can be too great of a financial burden for some. We want everyone to have an opportunity to experience AAC, so we offer travel grants and registration scholarships each year to low-income individuals with Ataxia. Learn more about our upcoming AAC.

Ataxia Advocacy

Advocating for those affected by Ataxia is an important part of our mission. We are involved in many advocacy activities for various legislative issues that might impact a person with an Ataxia diagnosis. Examples of advocacy topics that we support include things like Ataxia Awareness Resolutions. Newborn Screening Saves Lives Reauthorization Act, Telehealth Modernization Act, Disability Employment Incentive Act, and many others. Learn about various Ataxia advocacy efforts that are underway.

Member Stories

Sometimes the best way to learn is through the experience of others. Each person who is diagnosed with Ataxia experiences a unique journey. Many of our members have courageously shared their story with us. These stories offer a variety of viewpoints and very different experiences. Some members have lived with Ataxia for decades while others are recently diagnosed and still processing the impact it will have on their life. Read our member stories to learn what others have been through.

Ataxia Fact Sheets

We offer a variety of downloadable fact sheets that were written and edited by Ataxia experts. Check out and print our Ataxia fact sheets.

SCAsource Articles

SCAsource is Ataxia research news, directly from the Ataxia research community. They started as a website for research about SCAs and related Ataxias written in plain language by scientists. Their goal was to make research understandable for those diagnosed with Ataxia and their families. NAF partnered with SCAsource to host their site and publish their articles. Read SCAsource articles to learn about Ataxia-related research.

Participate in Ataxia Research

Participating in research is one way to take an active role in furthering understanding and treatment of Ataxia. Find an Ataxia research opportunity near you or learn about other ways to get involved below.

Join the Ataxia Patient Registry

Patient Registries are essential tools for Ataxia researchers. The purpose of a patient registry is to advance the development of treatments for a disease by connecting researchers with those who are affected with that disease. Your information will not be shared with others. If a researcher is looking for participants in a study that you may be eligible for, CoRDS will contact you to ask if you are interested. Learn more in the video to the right. Sign up for the CoRDS Ataxia Patient Registry.

Participate in the Brain Donation Program

Donating tissue for medical research is a deeply personal decision. It is also an important legacy gift that can advance Ataxia research. Proper planning can help ensure that wishes are accounted for and honored at the time of your or a loved one’s passing. Learn more about brain donation.

Enroll in a Natural History Study

A natural history study collects data that shows how a specific disease progresses in individuals over time. Natural history studies are essential for developing treatments for a disease. See if you are eligible to participate in the CRC-SCA Natural History Study

Get Involved in Fundraising

You have the power to influence the progress being made in Ataxia research and allow us to offer other programs that support the Ataxia community. There are many ways to support NAF’s efforts! Visit our Ways to Give page to learn about all the ways to get involved. 

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