Welcome to the 2023 Duradash® Awards! We have been so thrilled to see so many people participate in this year’s event, and work so hard to raise awareness in so many creative ways!
Today, we presented our awards on social media. Here are all the winners, in all the categories.
BECAUSE YOU MATTER AWARD
Congratulations to Theresa Coaxum, Rita Pascoe, Pilar DeAvila-Pinsley, Leticia Gonzales, Jennifer Harding, Deb Arlington, Liliya Taylor, Mary Garcia, Jo Butler, Ashley Anderson, Kristin Kyle, Angel Stuart, Nathan Green, Diane Van Wormer, Sandy Goode, Bonnie Veblen, Azfar Hakim, Amber Ferris, Julia Glace, Elizabeth Whitty, Laura Grillmeier, Amanda Hudson-Skipworth, Kelly Murphy, JJ, Lauren Taylor, Jess M, MorganWillBRB, T. Rantula, Felix funney, K Pablico, Morgan Horton, Amy Reiker, Liz Hryciw, Aaron Hryciw,and Janet Young!
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!
Advocacy Award
The “Advocacy” award goes to . . . May!
May said, “When my spinal CSF leak started, I didn’t have the energy to advocate for myself. As my journey has progressed, I am able to give back with some of my time. This week I gave time serving on a collaborative as a Patient and Family Advocate for a hospital as well as volunteer time to spinal CSF leak advocacy. We gave a long way to go, but we have come so far.” Thanks for all you do, May!
Living the dream award
The “Living the Dream” award goes to . . . Marielle Pezzella!
Marielle said, “At this time in 2022, I had just been diagnosed with my spinal CSF leak. It was inspiring and encouraging to see fellow leakers walking and exercising while I was adjusting to my new bedridden life. It was only in my dreams last year that I’d be able to participate in #duradash this year, so I am more than ecstatic to be able to participate in 2023! My goal is to walk and/or ride a seated bike for 150 mins per week. It’s difficult, but I hope to bring comfort to other leakers like me that things will be better eventually.” We’re so glad you’re in a better place this year!
Best new perspective award
The award for “Best New Perspective” goes to . . . Samantha Gosser!
Samantha celebrated being able to go to the gym as her #duradash activity. She also participated in our #duradash spotlight and says, “I now live life with a whole new perspective. Everyday upright is truly such a blessing!”
excellence in owl artistry award
The “Excellence in Owl Artistry” award goes to . . . Allison Milliron!
Allison had an amazing day of owl-painting and some very good news about some upcoming treatment.
Allison’s barred owl painting
She wrote: “As many of you know, living with a CSF Leak, we have our good days and our bad days. While I spent much of Sunday flat in bed, I spent all of today up and working! I decided to paint a new painting of the barred owls at our new house and spent 5 hours PAINTING today. It has definitely been a good day! On another note, I got an email today from Mayo letting me know I’m on the appointment wait list for the Photon-counting CT scanner. Hopefully I will get in to move forward in my healing soon.”
Best Friend Award
The award for “Best Friend” goes to . . . Anthony Ward!
Anthony raised $500 and rode his bike for #duradash—and also recently did an Ironman to raise awareness about spinal CSF leak for his friend Zack. Read all about it in our article, “The Sky’s The Limit: A Friendship Reaches New Heights.”
Best team name
The award for “Best Team Name” goes to . . . No Flocks Given!
Team members Bridget Janney, JJ, Lauren Taylor, and Jess M raised $400 for spinal CSF leak research, education, and awareness. Team leader Bridget loves flamingos and came up with the name in honor of the “flock” of family and friends that supported her during her leak with flamingo-themed gifts and cards to keep her spirits up! Great job, Team No Flocks Given!
START WHERE YOU ARE AWARD
This year’s “start where you are” award goes to . . . Tammie Stanford!
Tammie had big plans for #duradash, but unfortunately her plans were “dashed” by complications from the lingering injury that also caused her spinal CSF leak. She looked to her family for inspiration and resilience, and decided on doing therapeutic coloring as her #duradash activity, saying, “I was inspired by my beautiful, sweet, and hilarious niece, Audrey, to slow my roll and attempt coloring as my #duradash activity. The theme is ‘start where you are’ and this is where I am. What I CAN do right now is sit still for about 20 minutes and color.” Thank you, Tammie, for everything you’re able to accomplish starting just where you are!
PATHFINDER AWARD, MOST MINUTES OF ACTIVITY BY A PERSON WITH A SPINAL CSF LEAK
The “Pathfinder” award and the award for “Most Minutes of Activity by a Person with a Spinal CSF Leak” goes to . . . Pawel Kuczera!
Pawel accomplished an amazing 1500 minutes of walking that included a 20-mile stroll through the Golden Gate Bridge and back. He was hoping to raise funds “as a symbol of struggle for reclaiming my independence in everyday life and escaping the CSF leak prison many leakers suffer for too long. … I could type all day long, but I can’t effectively relate to you my coming out of bedroom walls and what it feels like to be walking streets in the City by the Bay. Makes me cry at times. Keep on pushing.” Wishing many more walks ahead for you, Pawel, as you find your path through this part of your journey!
MACRAME MAMA
The “Macrame Mama” award goes to . . . Bridget Janney!
Bridget helped raise $400 for her team, No Flocks Given, and made five incredible macrame pieces for her #duradash activity minutes—while also in the process of moving. Go, Bridget!
THE MOTHER OF DRAGONS AWARD
The “Mother of Dragons” award goes to . . . Ryne Galiszewski-Edwards!
Ryne literally is the mother of dragons—she has two Argentine Tegus, Oliver Queen (“Ollie”) and Franklin Dracarys Roosevelt (“Frankie”), both over four feet long. Her #duradash activity: unpacking from a recent move and acclimating Ollie and Frankie to their new backyard. Also raffling off some of the handmade bags from her store. She set a fundraising goal of $789 to mark the 789 days that she’s been affected by spinal CSF leak. “The best thing my leak taught me is to forgive myself when I can’t get up or can’t keep going.”
BEST TEAM LEADER AWARD
The “Best Team Leader” award goes to . . . Cosmo!
Cosmo led Team (Un)bearable in their quest to raise awareness via streaming video gameplay. Just four and half months into their most recent patch to address their spinal CSF leak, Cosmo rallied their teammates, played video games with friends, and also created figures of the (Un)bearable mascot character they designed using polymer clay and silicone molds.
Of course, a team leader wouldn’t be a great leader without acknowledging the support of their teammates, and Cosmo does just that, noting: “Very grateful to my friend Morgan who hosted the whole thing, they had a very complex and entertaining setup that I think contributed a great deal to its success.” Thanks, Cosmo, and thanks, Morgan! And thanks to everyone on Team (Un)bearable!
CROCHET QUEEN
The “Crochet Queen” award goes to . . . Hallie!
Hallie is one of the many participants doing fiber arts for this year’s #duradash. She says, “Crocheting is an activity that’s so important for my mental health with all the time I spend bed bound. It’s relaxing and keeps my hands busy, and I can choose projects at different levels of difficulty depending on where I am in my blood patch/decline cycle.” We love that you’re able to do something creative that also helps your mental health! Great job, Hallie!
BOOKS ARE MAGIC award
The “books are magic” award goes to . . . Megan Garrison!
Biggest heart, and Second-to-most money raised by a team
The awards for “Biggest Heart” and “Second-to-most Money Raised by a Team” goes to . . . Haines Street Biddies!
Together, Team Haines Street Biddies raised $695 in honor of their dear friend Amanda Pickard, who we tragically lost in January. Morgan Horton, Amy Reiker, Liz Hryciw, Aaron Hryciw, and Janet Young, thank you for honoring Amanda and continuing her mission to educate others, raise awareness, and push for more research about spinal CSF leak.
most money raised by a team
The award for “Most Money Raised by a Team”—in a repeat victory—goes to . . . Team (Un)bearable!
Team (Un)bearable returned this year to raise awareness via streaming video games and other activities and once again was the top team fundraiser! This year they raised $3,666 and were cheered on by 41 donors—and also collectively logged over 1,000 minutes. Fantastic job, Cosmo, MorganWillBRB, T. Rantula, Felix funney, and K Pablico! Congratulations!
“Second-to-most money raised by an individual” and “recovery is a verb” awards
The awards for “Second-to-most Money Raised by an Individual” and “Recovery is a Verb” go to . . . Jen MacKenzie!
Jen MacKenzie has been on a journey. Six years ago, she woke up with symptoms of a spinal CSF leak that never went away. She spent most of those six years bed-bound. But after her leak site was finally identified and surgically repaired, she says, “Today I am mostly upright, gradually participating in many aspects of daily life. Although I need significant rest, to closely guard my energy, sensory exposure, and impacts on my nervous system – I am tremendously improved! I can walk unattended, ride in a car without anti-nausea meds, eat in the same room with others, take part in group conversation, walk into a grocery store—things I could not do while leaking.” About recovery, she notes: “My leak site was repaired in a targeted durable fashion and I am now officially in a season of recovery. I’m thankful and hopeful, yet also at times frustrated and overwhelmed—recovery is a tricky business! There are no shortcuts or ways to speed up the recovery process of the nervous system. And there are fears not knowing if complete recovery is possible, the fluid nature of how co-conditions are impacted, and if a re-occurrence of a spinal leak might happen. Just like when seeking diagnosis and treatment, recovery demands courage and perseverance.” Though her recovery is still fragile, Jen was able to be present for a huge milestone: her oldest daughter’s high-school graduation. “Before getting my leak sealed, attending such an event or after parties would have been only a dream and never a reality.”
Jen raised $1,500 and was cheered on by 20 donors. We’re cheering, too! Thank you for everything you do to raise awareness and advocate for people affected by spinal CSF leak!
Most money raised by an individual, and biggest fan club
And finally, the awards for “Most Money Raised by an Individual” and “Biggest Fan Club” go to . . . Jodi Ettenberg!
Jodi is passionate about reducing the suffering of people affected by spinal CSF leak. She sustained one herself in August 2017 via a lumbar puncture, and while she has had multiple procedures to try to seal it, her leak continues, allowing for only limited “uptime” each day. This past January, she suffered a setback, which left her primarily bed-bound, but over the past several months she saw enough improvement that she was able to once again take gentle walks.
She planned to walk for her 150 minutes of #duradash activity, and she met her goal—despite the Canadian wildfires that threatened to disrupt her outdoor time altogether. As she put it, “thankfully there was a day of respite and I could get in one more slow wander around my area to complete my target. Not only did we cross [my goal of] $1500, but I got past the 150 minutes of walking over 14 days, something that would not have been possible in January when my leak reopened.”
Jodi raised $1,770 and was cheered on by 33 donors! Thank you, Jodi, for being such a powerful advocate for everyone affected by spinal CSF leak, and for sharing your curiosity and passion for knowledge with everyone in your community!
