Event Recap: 2023 Hunter Syndrome Community Conference

In March 2023, Project Alive continued with the third annual Hunter Syndrome Community Conference.  In carrying on the theme of community togetherness, the 2023 conference brought new featured speakers and topics. The conference has continued to see growth each year as more and more of the community has grown to love and appreciate the content these conferences bring.

The 2023 conference extended its reach to include those who support the MPS II community. This year’s conference wanted to bring the teachers, medical care workers and therapists who continue to make a difference in the lives of our MPS II families. Content not only included updates and sessions for those affected by MPS II but also included topics for MPS II supporters to help educate them so they can continue to make an impact.

The 2023 conference had amazing panel discussions with parents, siblings and affected adults that brought insight to the many ways MPS II touches lives. The parent panel featured Dr. Jen Carter, Kim Whitecotton and Board member Andrew Hoffman where they spoke on the struggles as well as the blessings in a raw and open discussion on raising a child with MPS II. Attenuated adults Jason Madison, Nick DiTommaso and Board Vice President Kyle Underwood discussed how MPS II affects their daily lives and what they do to work through some of the challenges. They also inspired us with all the amazing things they have each accomplished in their lives.  Super siblings Jasmine Henriquez, Emily Watson, Board member Nathan Grant and Executive Director Kristin McKay, spoke about the impact of having a sibling with MPS II has on them and for some, how it led them to be advocates for MPS II. 

The theme for this year was advocacy and there were sessions presented talking about the importance of advocacy and what families and supporters can do to help the MPS II community move forward.  We were honored to have Mark Dant speak on his journey as a parent advocate and what that has meant in his life. We also heard from Everylife Foundation’s Young Adult Rare Representatives about their journey in advocacy and what this program has helped them with in fighting for their missions. 

Representatives from RegenXBio, JCR, Denali, Takeda, and Homology presented their research and clinical trial updates which help inform the community and allow them to make the best decision on what is available for their child. Along with the pharmaceutical companies’ booths, this year saw the addition of other organizations that offer programs and support that the MPS II community could benefit from. We welcomed The Assistance Fund, The Everylife Foundation for Rare Disease, Courageous Parents Network, and many more. As the conference grows, we find it important to continue to increase our content and find new ways to keep the community in touch with all those who support them.