Events and Conferences

Join Us Tuesday October 21st at 8pm (EST) for our next caregiver community chat!

Please join us as we celebrate the county of San Bernadino officially recognizing the 3rd week of October as Hunter syndrome Awareness Week! Bring your family and friends to Big Al's in Ontario for a time of recognition, joy and solidarity.

It’s a common story among parent caregivers: the isolation, uncertainty about the future, lack of options, and a never-ending daily to-do list means the role of caregiver overpowers nearly every other facet of life. Video diaries from diverse caregivers featured in the film illustrate this universality, while interviews with mental health and policy/legal experts provide a broader view on the societal impacts. Through the power of unfiltered, compelling human stories, Unseen cultivates compassion and tangible support for the caregivers in our communities.

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