#duradash 2022
Duradash® 2022
Our virtual activity challenge aims to raise awareness and funds for spinal CSF leak to help more patients living with this under-diagnosed and disabling neurologic disorder receive correct and timely diagnosis and treatment!
You did it!
Duradash2022 is now over, and THANKS TO ALL OF YOU, we not only met but EXCEEDED our #duradash goal!
Thanks for the incredible, creative, passionate, vulnerable, and meaningful ways you have raised awareness about spinal CSF leak over the past twelve days!
We are so grateful for your support! With your help, we are making a difference in the lives of people with spinal CSF leak!
All about Duradash® 2022
Explainer video: What is #duradash?
Event Information
What is #duradash?
#duradash is a virtual activity challenge that runs from June 1 – June 12. During these 12 days, we are encouraging people to aim for a total of 150 minutes of any activity, to be accomplished anytime. Our goal is to have 100 people participate, for a grand total of 15,000 collective minutes and $15,000 by the end of #duradash!
Why 150 minutes?
We decided on a goal of 150 minutes because the most recent recommendation for people living with chronic illness or disability is to aim for 150 minutes a week of activity. But we know that’s not always possible. Luckily, the latest research also shows that ANY amount of activity is better than none.
What kind of activity counts?
Literally anything you can think of! Our theme for #duradash is “Start Where You Are,” and what that means is that you can do any activity that is appropriate for your current health status. For some people, that might mean going on a walk. But for others, that could mean reading a book, or knitting, or hugging a pet, or standing up to take a shower—you get the idea.
What will my #duradash campaign support?
The money raised by your campaign will enable the Spinal CSF Leak Foundation 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. In this way, funding education and awareness campaigns directly impacts the lives of those who are affected by spinal CSF leak.
Where do I sign up?
Register at https://duradash.causevox.com to participate!
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’ve created 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. Link to come!
Are there #duradash T-shirts?
Yes! You can find T-shirts and more in our spreadshirt shop!
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?
- Download our online toolkit, which has an event overview, information, templates for emails and social media posts to get your friends and family involved, and more.
- Wear purple on GO PURPLE day, June 8, and share on social media!
- Share your story: Tell others what you are doing and why.
- Share your progress: Post updates on your page and let people know what you’re up to!
- Use the hashtags #duradash #spinalCSFleak and #becauseyourduramaters when you post on social media.
Further reading:
See our main #duradash page for more info on #duradash in years past.
Duradash® Spotlights
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. Here are the four Spotlights from this year’s event!
Bridget Janney
Cosmo and Team (Un)bearable
Lindsay Chandler
Jennifer Harding
Duradash® Awards
Each year we give out Duradash® Awards to celebrate how participants raise awareness in so many creative ways!
Here are all the winners for 2022, in all the categories.
BECAUSE YOU MATTER AWARD
Congratulations to Martha Bond, Jo Butler, Cara Gady Church, Ann Fields, Lindsay Chandler, Heidi McGuinn Duncombe, Liz Hryciw, Aiza Jose, Jeremy Kong, Danielle Laney, Jenny McClure, Pittsburgh Leakers, Linda Pohuski, Simran S, and Laura Tietz!
Thank you for participating in this year’s #duradash! Whether you were part of a team or going solo, you did a fantastic job helping to raise awareness about spinal CSF leak!
WALKING THE WALK
The “Walking the Walk” award goes to . . . Jennifer Harding!
Jennifer was one of our “duradash spotlights” this year. Her goal? “Walking three miles a day, five days a week for #duradash in celebration of life again, in thanksgiving for all the medical professionals and online friends who helped me, and in solidarity with those still awaiting their healing.” Nice job, Jennifer! Visit her #duradash campaign page here.
MOST ENRICHING ACTIVITY
The “Most Enriching Activity” award goes to . . . Sonia Aguilar!
Sonia suffers from an iatrogenic spinal CSF leak and is passionate about raising awareness about this extremely debilitating condition. For #duradash, she spent 150 minutes reading to her children, Ellie and Matty. Nice job! Visit her #duradash campaign page here.
MOST DEDICATION BY A TEAM MEMBER WITHOUT A SPINAL CSF LEAK
The award for “Most Dedication by a Team Member Without a Spinal CSF Leak” goes to . . . Bridget’s Flamboyance team member Evan Wildstein!
Evan used #duradash as a chance to finally use the home gym he built during the pandemic, and also walked and ran in the Texas heat! Check out his updates here.
OVERACHIEVER AWARD
The “Overachiever” award goes to . . . Allison Milliron!
Allison not only completed (and exceeded) her activity goal in one day, logging 720 minutes, she also put in a 75-hour work week! Very impressive! Check out her page here.
MOST UPDATES POSTED
The award for “Most Updates Posted” goes to . . . Bridget Janney!
Bridget posted a whopping 14 updates on her whirlwind of a #duradash, sharing her progress as she took walks with her family, played catch with her kids, did strength training, and even some elliptical and step workouts! Go, Bridget!
MOST MINUTES OF ACTIVITY BY A PERSON WITH A SPINAL CSF LEAK
The award for “Most Minutes of Activity by a Person with a Spinal CSF Leak” goes to . . . Bonnie Veblen!
Bonnie, who suffers from hEDS and POTS in addition to a spinal CSF leak, focused on building strength this #duradash. She spent her minutes going to physical therapy, doing qi gong, walking, and she even took a trip to Santa Cruz and got in some flat time at the beach. You can see her photos and updates here.
CUTEST WALKING PARTNERS
The award for “Cutest Walking Partners” goes to . . . Samantha Gosser!
Samantha shared her #duradash progress on Instagram through posts and stories, where we got to see a glimpse of her adorable walking partners. Great job, Samantha! And a bonus congrats to baby Madison, who decided to join in the fun and take her very first steps on the last day of #duradash!
LOFTIEST GOALS SET BY A TEAM MEMBER WITHOUT A LEAK
The award for “Loftiest Goal set by a Team Member without a Leak” goes to . . . Justin Klugh!
Justin participated in #duradash to raise awareness and support his friend Amanda on Team Pickard. Last year he won the coveted “Most Creative Activity by Someone Without a Leak” award for his work, which included yelling at strangers at the post office. This year, he set his sights on getting into “softball shape,” which he defines as “the state of physical being in which you are capable to running around the bases exactly once in a 45-minute window without hallucinating. Keeping expectations reasonably low is a big part of my physical regimen.” You did it, Justin! Congrats!
BUSY BEE AWARD
The “Busy Bee” award is a two-way tie!
Congratulations to busy bees Nicole Craig and Tammie Stanford!
Nicole’s #duradash activities were plentiful, despite dealing with a spinal CSF leak! Her week included recording her huskies “singing” happy birthday to a friend in the hospital, helping to cook dinner for the first time in months, a mother-daughter field trip to the store, her first haircut in two years and the first time not using her wheelchair outside of the house, and going for IVIG treatment! Whew! What a fantastic whirlwind of activity! Great job, Nicole!
Tammie spent her #duradash not only helping one of her kids move home, another kid move away from home, and another kid celebrate high school graduation—which is enough to make anyone dizzy from all the activity—she also spent it battling the vertigo and vestibular migraines that have plagued her ever since she got her spinal CSF leak. Having to have vestibular neurology testing is no fun, especially in the midst of such an action-packed time in family life. Thanks for everything you do, Tammie!
THE ULTIMATE DASH AND BEST USE OF TIKTOK AWARDS
The “Ultimate Dash” and “Best Use of TikTok” awards go to . . . Amanda Pickard!
Last year, Amanda famously won the award for “Most Updates from Inside a Medical Facility.” This year she thankfully posted entirely from outside of the hospital. She also completed her most challenging physical activity yet, something she called “The Ultimate Duradash”: taking the train from New York City to Pennsylvania while battling a migraine.
She documented all of her #duradash activities on TikTok, where she uses her platform to raise awareness about spinal CSF leak. You can see her #duradash page here.
CRUSHED IT HARDEST
The “Crushed it Hardest” award goes to . . . Victoria Williamson!
Victoria did all kinds of physical exercise for #duradash: strength and mobility classes, weight machine circuits, trail walking, gardening, water aerobics, prepping her son’s bedroom for painting (and then painting it!), something called “Corefit”?? One day she “took it easy” with just a 50-minute walk in her hilly neighborhood! She didn’t count one day where she pushed a loaded shopping cart all over Costo—but she should have! Victoria, you are unstoppable! Check out all her updates here.
MOST CREATIVE WAY TO DASH AND MOST MINUTES OF ACTIVITY BY A TEAM AWARDS
The awards for “Most Creative Way to Dash” and “Most Activity Minutes by a Team” go to . . . Cosmo and Team (Un)bearable!
Cosmo, who got his spinal CSF leak when he was just 17, put together a team for #duradash that spent their time livestreaming video games to raise awareness for spinal CSF leak. They also raffled off crocheted items (including a brain hat with detachable spine scarf) and shared crochet patterns for a spinal CSF leak mascot that Cosmo designed himself. Overall his team spent a collective 2806 minutes (that’s almost 47 hours) on #duradash! Thanks so much, Cosmo and Team (Un)bearable!
START WHERE YOU ARE AWARD
This year’s “Start Where You Are” award is a three-way tie:
Congratulations to Connie Rim, Jen MacKenzie, and Renee Sunshine!
CONNIE RIM is unstoppable when it comes to raising awareness about spinal CSF leak, whether via #duradash or her TikTok account or her posts on Facebook and other social media. She explains what her life with a spinal CSF leak is like: “Currently, I get to spend an hour total upright each day, unless my pain is too severe. I must spend it wisely and take into consideration the total time I need to perform daily activities such as use the restroom, switch out my ice packs, sit propped up or lay down in bed to eat, open the door to let my dog come in and out, warm up food in the microwave, etc. Having to plan my upright time brings a previously dismissed and otherwise taken for granted experience to the forefront of my life.” Thanks for starting where you are, and doing so much!
JEN MACKENZIE used her #duradash minutes to educate, both about spinal CSF leak in general, and about what life is like for someone living with one. She shared her experiences of the accommodations she has to make—including an amazing trip to the hair salon, where she was able to be completely flat on a couch the entire time. “Unless I’m up to quickly use the restroom or eat here in my bedroom, I spend my days flat on my back, on my bed, to keep my symptoms tolerable. Every day, all day. Even though I’m primarily bedbound, sometimes life’s busyness, stressful situations, or poor sleep can cause symptoms to increase (and/or my coping tolerance wains). This forces me to reduce my energy and stimulus even more, and increase my self-care strategies.” See her campaign and read her updates here.
RENEE SUNSHINE did her fundraising on Facebook, where she shared photos of her life with spinal CSF leak to help raise awareness. Many of her photos are taken from the perspective of being totally flat, to help show what life truly looks like when living with this condition. Through her eyes, we see the trees and sky, the view from her deck, the inside of the van where she lays flat while her dad drives her to doctor’s appointments. And of course there’s also photos of the adorable kittens she’s fostering! Thanks, Renee, for starting where you are to show everyone what you see!
SECOND-TO-MOST MONEY RAISED BY A TEAM
The award for “Second-to-most Money Raised by a Team” goes to . . .
Bridget’s Flamboyance!
Together, Bridget’s seven team members raised $1,015! Congratulations, Bridget and Bridget’s Flamboyance!
MOST MONEY RAISED BY A TEAM
The award for “Most Money Raised by a Team” goes to . . .
Team (Un)bearable!
Together, Cosmo’s 12 team members raised $4,897! Amazing!!!! Congratulations, Cosmo and Team (Un)bearable!
SECOND-TO-MOST MONEY RAISED BY AN INDIVIDUAL AND BIGGEST FAN CLUB AWARDS
The awards for “Second-to-most Money Raised by an Individual” and “Biggest Fan Club” go to . . . Ryne Galiszewski-Edwards!
Ryne raised $2,500 dollars and had 54 donors cheering her on! Currently living with a spinal CSF leak, Ryne has spent her activity minutes walking the lake near her house, but also raising awareness through the business she owns and operates with her husband. They have been offering raffle entries for their handmade handbags for every $5 donation and $50 off weighted blankets for every $10 donation to her #duradash campaign. Just fantastic! Great job, Ryne!
MOST MONEY RAISED BY AN INDIVIDUAL
And finally, the award for “Most Money Raised by an Individual” goes to . . . Jen Mackenzie!
Jen raised $2,815 and had 30 donors cheering her on! She shared her story publicly for the first time during #duradash, shedding light on what it’s like navigating life with a long-term spinal CSF leak. She spent her #duradash minutes on much-needed self-care, sitting outside (a rare treat!), snuggling her puppy, taking a shower, and managing her daily life while mostly confined to bed. Amazing job, Jen! Thank you so much for everything you do to raise awareness about spinal CSF leak!
