Conference Testimonials - AMCSI: Supporting the Arthrogryposis Multiplex Congenita Community

Testimonials

We are truly grateful for the thoughtful testimonials shared by attendees of our past Annual AMCSI Conferences. Hearing how these gatherings have supported, connected, and uplifted members of the AMC community means so much to us. Each message reflects the heart of why we do this work, and we deeply appreciate everyone who takes the time to share their experience. Your words help guide our efforts and strengthen the sense of community that makes the conference so meaningful year after year.

If you would like to tell us about your experience at conferences or recevieing grants/scholarships from AMCSI please CLICK HERE.

"Norē LOVED PROM NIGHT! They played his jam and he immediately wanted to come out if his chair to break dance on the floor 🤣 Seeing everybody cheer him on and him grabbing the mic to get everybody to sing AMC-123 instead of ABC 123 like the song goes melted my Mama heart. The daily sessions during the conference filled me with so much information I never could've imagined. I thoroughly enjoyed sitting in on the doctors, therapists, and every speaker whose sessions we attended. The small groups/talks were special to me in so many ways. This trip, we named "The Sonshine Voyage," was our very first solo adventure together, just me and my SONshine! And tho no one could see it, it was empowering in every possible way. I connected with other moms walking similar paths, and found comfort, strength, & inspiration in those conversations. Watching Norien flourish in a space built just for him filled my heart more than words can ever say. We're so grateful to Ani, to the AMCSI crew, the Dust Family(who generously donated), our family who helped us make it happen, and to the entire AMC community for welcoming us with such warmth. This wasn’t just a trip. It was a beginning, a light-filled reminder that we are never alone, and that beautiful things bloom when we least expect them. 👣💙✨️"

“Attending the AMC Conference reminded me that I’m not alone. It was a powerful ‘been there, done that’ moment seeing so many people living full, independent lives gave me hope that I can and will live a long, successful, healthy life.”

"Growing up, I never met anyone with AMC in person. This organization allowed me to accomplish meeting others my age, similar type of AMC and more! As a first-time attendee, I had an incredible time connecting with people who share similar lived experiences. Whether it was contributing to the research, Meeting Valerie Pepe for the first time, leading an impromptu jam session to share my love of music, or simply enjoying drinks and laughter with some amazing individuals — I felt truly seen, supported, and uplifted. It was a deeply validating and heartwarming experience."

"This was my very first AMCSI Conference, which I was able to attend courtesy of a generous donor. When I joined one of the many sessions available to discuss a variety of topics, I felt like I had known many of these people my entire life despite never having met almost all of them. I found it very eye-opening to hear from other people with AMC from all walks of life about what their experiences were like, both similarly and different to myself. There is immense value in holding an event like this every year because there were so many times growing up where I felt like I was one of one. I'm very grateful to Ani and the rest of the AMCSI staff for ensuring a fantastic event that I will remember forever, and also hope to attend annually moving forward."

“Attending the Arthrogryposis Conference for the very first time was an unforgettable experience for our family, made possible through the generosity of the scholarship program. Walking into a space filled with so many beautiful young adults with arthrogryposis, living confidently, being themselves, and having fun, was incredibly powerful for me as a mom. It gave me hope and reminded me that my son has such a bright future ahead of him. One of the most meaningful parts for me personally was connecting with other mothers who truly understand the joys and challenges of this journey. Having those conversations, sharing stories, and feeling that instant sense of community was deeply comforting and inspiring. For my son, the highlight was making new friends—friends who share his experiences and with whom he immediately felt a special connection. Seeing his smile as he laughed and played with them is something I’ll never forget. For my husband, one of the moments that stood out was meeting Teresa, an extraordinary person who paints beautiful artwork using her mouth. Her creativity and determination left a lasting impression on him and reminded us of the strength and possibilities within this community. We returned home from the conference with full hearts, new friendships, and a sense of belonging that we didn’t even realize we were missing. We are so grateful to have been given this opportunity and will carry the inspiration, hope, and connections we found with us forever.”

“Our experience was wonderful, I grew up with arthrogryposis and I had never seen such a sense of community and support. I was very overwhelmed with emotions. It made me reflect a lot on growing up feeling like it was just me who was different. As well as reflecting on how many different obstacles a person can overcome, things some can see as impossible, someone else has adapted to. It was beautiful. We were lucky to join Kelly and Maria’s family during dinner. Kelly really made me feel welcomed and helped break my introverted personality 🙂 As a person who grew up with AMC and a mother of an AMCer , my favorite part of the conference was watching the kids and their fearless spirit. Their smiles filled my heart and eased my worries about Rayan ever feeling isolated when he grows up. We are hoping to join again next year in Ohio!”

Testimonials

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