International Ataxia Awareness Day: 7 Ways To Get Involved

To live with ataxia is to explain the condition over and over again. Many people don’t know much about this neurological disorder. That’s one reason why International Ataxia Awareness Day (IAAD) is so important to recognize.

International Ataxia Awareness Day happens on Sept. 25 every year. It’s coordinated by ataxia organizations worldwide, including the National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) in the United States.

IAAD has been celebrated since 2000 to raise awareness and highlight ways to improve the lives of anyone living with or affected by ataxia.

No matter what type of ataxia you’re living with — whether it’s Friedreich ataxia (FR or FRDA), multiple system atrophy, spinocerebellar ataxia, or another type — this day is for you. It’s a designated time to talk about ataxia, share your personal story, raise money, and get the support you need.

Here are ways to get involved in International Ataxia Awareness Day, based on your current health, comfort level, and time and energy.

1. Participate in Hill Day

Hill Day is a day to meet virtually with members of Congress to talk about life with ataxia and advocate for issues important to the ataxia community. Because it’s virtual, you don’t have to pay to travel to Washington, D.C., or worry about accessibility. Instead, you can focus on what you’d like to say to Congress.

This event gives you a chance to shape future policy from wherever you’re most comfortable.

2. Leverage Social Media

Social media is a great platform for getting the word out about IAAD. You can also share your own story about living with this rare disease or offer information to help educate people about ataxia.

If you’re not sure what to share, organizations like NAF offer graphics and other ideas for posting. Each year has a different hashtag, so check that you’re using the right one. That way, interested people can easily find your post.

You can also participate in the Ask Me About Ataxia social media awareness campaign if you’re comfortable doing so. Post a photo of yourself or a group and use the hashtag #askmeaboutataxia. Then answer people’s questions about ataxia so they can learn more about it.

If you’re planning or attending events around ataxia (as discussed below), social media is also a great way to share about the event or raise funds, if appropriate. Posting on social media can extend your reach beyond your community.

3. Plan or Attend an Ataxia Fundraiser or Event

Many events happen on or around International Ataxia Awareness Day. NAF organizes a variety of events, and you can help coordinate, attend, or participate in them. Keep an eye on their website and sign up when you see an activity that interests you.

One event is the Walk N’ Roll, a fundraiser walk held in different cities around the United States. Find the one you want to attend, sign up, raise money, and then walk for ataxia.

Other fundraising events you can plan or attend include dinners, sales, webinars, and more. There many options to choose from.

4. Share Your Art

If you’re a writer or an artist, share your experience with ataxia through your work on IAAD. If you live in the United Kingdom, Ataxia UK might help you spread the word. You can submit your art to them so they can share it as part of their campaign.

Even if you don’t live in the U.K., you can share your art on your social media or in person. Setting up a studio show or an art show featuring artists affected by ataxia could be a great way to raise awareness and fundraise for ataxia.

5. Learn More About Ataxia

One of the most important things you can do for IAAD is learn more about the condition. Even if you think you know all there is to know, there’s always more. You might want to learn about different forms of ataxia, better understand symptoms, read up on the latest treatments, or educate yourself about the history of ataxia.

The more you know, the more empathy you’ll have for yourself, people like you, and others living with ataxia. Educating yourself can also help you feel more comfortable educating others or answering questions about ataxia.

For instance, when you know about how ataxia affects children, the ataxia gait, or hereditary ataxia, you’ll be better equipped to help others learn about those aspects of the condition too.

6. Stay Local

When you hear about IAAD, you might think of doing something on a large scale. However, some of the most important work you can do around ataxia is in your local area. After all, the more people know about it, the more they’ll understand and support you, your family members, and others in the area living with the condition.

There are many activities you can do in your local area. Consider:

• Speaking at a school or hospital about ataxia
• Setting up a booth or a stand outside a business (get their permission first) or at an event
• Writing an article for your local magazine or paper could help
• Talking to your neighbors about your experience

Though small steps, you can help slowly but surely raise awareness of ataxia. Start changing the world by changing a few people at a time.

7. Wear Blue

Blue is the color designated for ataxia awareness. Wearing it on IAAD can help start the conversations.

Since blue is a pretty common clothing color, you might want to do something to stand out, such as wearing all blue or wearing a blue awareness ribbon on your clothes. People recognize ribbons as awareness symbols and might be more likely to ask about them.

If you don’t want to wear blue, see if your country’s ataxia nonprofit has wearable merchandise. Hats, bracelets, shirts, sweaters, and more can subtly influence people to think and talk about ataxia.

Why an Awareness Day Is Important for Ataxia

The overall goal of International Ataxia Awareness Day is to improve the lives of anyone living with or affected by ataxia. This goal is achieved by:

• Helping those with ataxia feel less isolated
• Raising awareness through education
• Sharing stories of people with ataxia
• Fundraising for ataxia research and related causes
• Advocating for ataxia

Some people choose to get genetic testing for ataxia on IAAD, since early diagnosis is key.

Join the Conversation

On MyAtaxiaTeam, people share their experiences with ataxia, get advice, and find support from others who understand.

How will you help raise awareness for ataxia on IAAD and beyond? Let others know in the comments below.