Ryan Rodarmer: From Nothing to a Global Community – 45 Years of The Marfan Foundation
Ryan Rodarmer, Director, The VEDS Movement at The Marfan Foundation, shared a post on LinkedIn:
“45 years ago, The Marfan Foundation was born out of necessity – because there was nothing.
No community. No resources. No one gathering in a room to talk about us.
Today, there were at least two of those rooms in the US alone, while my colleague Eileen Novins shared the Foundation’s work with a group of professionals across the ocean in Geneva, Switzerland.
Simultaneously. Houston and New York City and Geneva.
Stateside, experts coming together at the Pediatric Aortopathy Symposium at Texas Children’s Hospital — organized by the incredible Dr. Shaine Morris – and across the country in NYC, talking about our conditions.
What works. What doesn’t. How to approach the hardest cases. What’s on the horizon.
I’m sitting here in absolute awe.
Forty-five years. From nothing to… This.
To every clinician, researcher, and specialist who showed up today – who shows up every day – thank you.
For working tirelessly to extend our lives.
To improve them. To give us hope when hope can feel hard to hold onto.
For being part of this Foundation‘s story. For being part of our story.
From the bottom of my heart.”
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