Founder & Chair of CHAMP1 UK | Board Member of the CHAMP1 Research Foundation | Senior Technical Support Engineer at Bistech plc
After taking some time to reflect (and recover from jet lag) on the whirlwind experience that was the CHAMP1 Global Conference 2024 in Orlando, I am still in awe of the entire experience. When we received my daughter Sienna’s diagnosis in 2022, we had no way of understanding what the future would hold—for her or for us. But events like this, and the incredible CHAMP community, have given us something invaluable: hope. On Thursday, I was honoured to become a board member of the CHAMP1 Research Foundation . It’s a privilege to help build on the amazing work already done by pioneers like Jeff D'Angelo and many others before me. On Friday, I had the privilege of meeting 20 CHAMP families from around the world—part of the 200 families affected by this ultra-rare condition. Being surrounded by people who truly understand our journey and watching our children interact and form friendships was deeply moving. We also had a chance to meet 2 other CHAMPs with the same variant as Sienna and share stories with their families. Saturday brought a series of fascinating talks and presentations from leading professionals who had travelled from all corners of the globe to share updates, breakthroughs, and exciting news with us. Later that evening, the board members and researchers gathered for dinner, where I had the honour of sitting next to Dr. Kozo Tanaka, the man who discovered and named the CHAMP1 gene. I also shared drinks and stories with many of the researchers, including Dr. Stefano Berto, who has dedicated his entire lab to CHAMP1 research and is testing a potential treatment for children like my daughter. Dr. Berto has recently been awarded a highly deserved R01 grant from NICHD to further study CHAMP1 over the next five years. Sunday morning brought more insightful talks, but the afternoon was all about bonding with the CHAMP1 community. Most of us ended up at the pool, where we discovered that all our CHAMPs love to splash around together. It was such a heart-warming way to connect. Being part of this event was a tremendous honour. I was proud to represent CHAMP1 UK and to help bring together families and researchers who are all working toward the same goal. The memories and friendships I’ve made will last a lifetime, and I’m more energized than ever to support the CHAMP1 community in every way I can. A heartfelt thank you to all the researchers, the community builders who came before me, those who’ve joined since, and every single volunteer who made this event possible. I can’t wait for the CHAMP1 Conference in Europe in 2025!