What is #duradash?

#duradash is a community event taking place from May 28 – June 10. During these 14 days, the Spinal CSF Leak Foundation is encouraging participants to accomplish a total of 150 minutes of any activity, to be done at any time, anywhere, in support of spinal CSF leak awareness.

What you do and when you do it is up to you—and ANY activity counts, not just physical activity! Last year, participants logged activity minutes playing video games, doing photography projects, reading to their kids, taking short walks, spending time with their pets, making art while flat, and more—all of which counted towards their 150-minute goal.

Our theme is “start where you are,” and our goal is to have 100 people participate, for a grand total of 15,000 collective minutes by the end of #duradash, all to raise awareness and support research for intracranial hypotension and spinal CSF leak.

Why 150 minutes, and why “any” activity?

The physical activity recommendation for Americans living with chronic illness or disability is 150 minutes per week of moderate exercise. But that’s not always possible for everyone—especially people living with spinal CSF leak. While research shows that any amount of activity is better than none, for many people living with spinal CSF leak, being upright at all is a challenge, due to pain and neurological symptoms. This is why Spinal CSF Leak Foundation is encouraging participants in #duradash to “start where you are” and perform any activity you enjoy that’s appropriate for your health state.

What kind of activity counts?

Literally anything you can think of! Some people might aim to go for a short walk every day. Others might choose to log activity minutes reading a book, or doing a craft, or snuggling with a pet, or standing up to take a shower—you get the idea. Whatever activity you choose to do, #duradash is a great opportunity to raise awareness about spinal CSF leak by sharing a little glimpse of your life—whether that’s 150 minutes of everyday life activities, or meeting a specific physical or emotional goal.

What will my #duradash campaign support?

The money raised by your campaign will support the Spinal CSF Leak Foundation’s mission and research/educational goals. We believe it is crucial to continue to raise awareness among medical professionals by educating physicians and others about intracranial hypotension and spinal CSF leak. Physician awareness of spinal CSF leak is crucial to helping shorten the time between onset of symptoms and diagnosis, and between diagnosis and treatment—and also to understanding and addressing the complexity of spinal CSF leak, especially in the cases of those who continue to suffer despite intervention. Alongside this commitment to education and awareness, the Foundation intends to award research grants to help advance the understanding, diagnosis, and treatment of spinal CSF leak, thus directly impacting the lives of all those who are affected by it.

Where do I sign up?

You can register to participate in #duradash at duradash.causevox.com (NOTE: Registration is now closed, as the event is over)

Do I need to have a team?

That’s up to you! You can sign up individually and do #duradash solo—or you can create a team, or join an existing team.

Is there a registration fee?

Registration is free!

How can I help spread the word about #duradash?

We have a toolkit for you, complete with messaging and graphics and all kinds of information you can share with your family and friends online, on social media, via email, or even via texting.

Will there be prizes?

Yes! We plan to award prizes to the team that raises the most money; the individual who raises the most money; the team who records the most minutes of activity; the individual who records the most minutes of activity; the teams with the most creative activities; and the individuals with the most creative activities.

What else can I do?

• Check out our online toolkit, which contains an event overview, information, templates for emails and social media posts to get your friends and family involved, and more.
• Celebrate GO PURPLE day during leakweek on June 7! Break out your purple outfits, decorative lights, fingernail polish, hair dye, and whatever else you want to use to show your support! Show us your stuff and share on social media using the hashtag #leakweek2023
• Share your story: Tell others what you are doing and why.
• Share your progress: Post updates and let people know what you’re up to!
• Use the hashtags #duradash2023 #spinalCSFleak and #becauseyourduramaters when you post on social media.

Further reading:

See our main #duradash page for more info on #duradash in years past.

Each year, we feature some of our #duradash participants in a feature we call the “duradash® spotlight,” to highlight the ways in which people raise awareness and the goals they have in general around educating others about spinal CSF leak.

Read about Samantha and her duradash® plans here!

Read about Allison and her duradash® plans here!

Each year we give out Duradash® Awards to celebrate how participants raise awareness in so many creative ways!

Check out all of this year’s winners here!