Diane Rich Shares Her 2025 Conference Experience
Diane Rich, PT, DPT offers her first-person reaction to presenting at the Foundation’s 40th Conference and feeling enriched as a community member.
I was a first-time Marfan Conference speaker this year, and I had the chance to connect with my audience not only as someone living with Loeys-Dietz Syndrome but also as a physical therapist. I never imagined that the clinical knowledge I’d gained would one day become part of my daily life. I was excited to share what I’d learned. The attendees were curious, hopeful, and perceptive, and I was humbled by their tenacity.
After my talk, someone approached me about hand pain, and their hand looked and felt remarkably like mine. I’d never experienced a similarity like that before. I shared how the splints on my own hands had helped me, and they listened with openness and curiosity. It was an unspoken reminder that we’re never as alone as we think.
The days were full of lectures, questions, hugs, shared stories, and the kind of laughter that only comes from mutual understanding. I watched kids dance and play, forming quick friendships. I saw grieving parents find each other and exchange the kind of comfort only they could offer. I heard experts speak with clarity and warmth, offering not just their knowledge but also their presence — because they believe we’re worth showing up for.
There’s something healing about being surrounded by people who truly see you. Physical therapy teaches us how to restore movement, but this conference reminded me how we restore each other: one gesture, story, and connection at a time.
-Diane Rich, PT, DPT
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.