Welcome to Stephanie's HA WALK Page
Thank you all for visiting my page. I want to take a moment and talk about my WHY with you!
First, as you probably know, I am obsessed with the Hydrocephalus Association! I was diagnosed with hydrocephalus and shunted at 6 weeks of age. Thankful for my pediatrician who identified it while measuring the circumference of my head after birth. I have been SO lucky to have only had 3 malfunctions since then. I feel blessed to have hydrocephalus and want to focus on helping others with this condition. It's not the type of condition where everyone who has it has the same experience.
You have probably met my ridiculously funny (and 13-month older) sister Sarah. She has had quite a different journey with hydrocephalus. She was diagnosed at 4 years of age and has battled surgery after surgery for 20 years: 32 in total. During one surgery, there were complications that left her paralyzed on the right side; forcing her to learn how to read, write, eat, and walk again. She never ceases to amaze me as she has overcome the majority of those challenges and has obtained three college degrees.
When Sarah & I were young, Mom started the St Louis Hydrocephalus Support group. Over time, she merged with the National Hydrocephalus Association and we began attending the bi-annual conferences. We have learned a lot and met just the most amazing people with hearts of gold and hope for a cure.
In 2008, I started chairing/co-chairing the WALK in St Louis. Entirely led by volunteers, all with the same wishes to find a cure. It's been such a rewarding experience. In 2023, we raised the most StL has ever raised: $80K!!! I can't wait to surpass that this year.
In 2021, I lost one of my closest friends. While she was battling cancer, a hydrocephalus surgery and shunt placement saved her life, allowing her to live a few more months with her family. I WALK each year in honor of Casey Brownfield.
In 2022, I was invited to join the Board of the National Hydrocephalus Association and in 2025, I will be the Chair of the Board! I love being a part of the Hydrocephalus Association family. I love the families, the staff, and the research without end! Please consider helping expand the research and support HA does by walking with or sponsoring me!
Thank you!
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