Aug. 14, 2020
Posted by Valaree DonFrancesco
At the Head of the Herd is… Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)
Katie advocates for those living with… Vascular Ehlers-Danlos Syndrome (VEDS)
How Katie got here… When I was diagnosed with VEDS at 28 years old in 2017, I felt very alone. I was also pretty fired up about how long it had taken me to be diagnosed with a condition that I’ve had since birth. The diagnosis also came with a reason for the unexplained neck pain I had been suffering with for over a year – a dissected artery.
My new reality of living with a condition that can spontaneously cause life-threatening ruptures of my arteries and organs, coupled with the fact that none of my previous doctors had known enough about VEDS to correctly diagnose me, inspired me to get involved in VEDS advocacy and research.
I started a YouTube channel in 2017, and by 2018 so many people had reached out to me about VEDS that I decided to start a podcast to share their stories; Staying Connected. I also got heavily involved in a research collaborative with other affected individuals and researchers with the common goal to guide patient-centered research.
Only a few months after I became familiar with The Marfan Foundation in 2019, they launched a division devoted entirely to VEDS and I came on board as Director of the division. It’s been a great adventure!
What Katie is hoping to accomplish in 2020… My goals this year are to start moving the needle in medical education on VEDS and fundraise for research toward a preventive treatment for the life-threatening emergencies that people with VEDS face daily. I also hope to continue to bring the community together to develop lasting friendships and combat the sense of isolation that individuals with VEDS can experience.
In the next five years, Katie plans to… Grow The VEDS Movement. We’re still in the first year of our journey as a new division of The Marfan Foundation, but in the future we anticipate offering more programs and services for affected individuals and families, expanding VEDS medical education initiatives, and fine-tuning our research direction.
Tips for running an effective organization… I think it’s incredibly important to involve passionate community advocates and really listen to their input. At the same time, it’s important to work with those who have experience within the organization, that way you can transform those community desires into feasible projects and campaigns.
How Katie remains hopeful… On a very personal level, I’m inspired by the growing support among organizations, the community, researchers, and physicians for VEDS. We are building an effective network of individuals dedicated to the cause across the world, and I know that even after my time has come, this network will continue to carry the torch.
Katie’s favorite NORD resources… I’ve found NORD’s COVID-19 webinars to be very helpful. I’m also especially excited about the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP).
Katie’s words to live by… “If I am killed, I can die but once; but to live in constant dread of it, is to die over and over again.” – Abraham Lincoln
If Katie found a cure for VEDS and had to find a new mission she would be… advocating for women’s rights, specifically in the fight against sexual violence towards women and children.
Last book Katie read… Wild by Cheryl Strayed
Katie’s hobbies… podcasting, being outdoors, music, writing, painting, and reading