Events and Conferences

Join Project Alive for a special edition of our Caregiver Community Chat in honor of Father’s Day. This heartfelt virtual gathering will celebrate and support the incredible dads and father figures in the Hunter syndrome community. This is a space to connect, share experiences, and uplift one another. Come hear stories, swap advice, and honor the unique journey of caregiving from a dad’s perspective. All MPS caregivers are welcome!

Project Alive is excited to host a screening of The Zebra and the Bear on March 16th at 3 PM via Zoom. This powerful documentary highlights a mother’s relentless quest to secure a groundbreaking gene-therapy treatment for her daughter facing an ultra-rare disease. Following the screening, there will be a Q&A with the film's mother and creator, offering invaluable insights into the challenges and triumphs of advocating for rare disease research. We invite you to register and be part of this impactful conversation. Link to register: https://conta.cc/4irfmJl

In March of 2024, Project Alive held the fourth annual Hunter Syndrome Community Conference. This year’s conference brought new speakers and topics in which the community has shown interest. The yearly virtual conference continues to address the needs of the Hunter syndrome community.