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Project Alive Welcomes Dr. Kim Stephens as Emeritus Board Member

May 28, 2024

Project Alive, a national Hunter syndrome research and advocacy organization, has welcomed Dr. Kim Stephens, Executive Director of the Dr. Joseph Muenzer MPS Research and Treatment Center, as Emeritus Board Member.

An Emeritus Board Member serves as an advisory role to an organization. It is a title given only to exceptional past board members that have continued to serve the organization after their formal departure. Dr. Stephens brings years of advocacy experience and passion as well as a strong Hunter syndrome community connection with her work, as well as being a parent of an affected child. Her strong leadership, depth of knowledge, and her compassion for others in the rare disease space add value to Project Alive and its mission.

"We are so grateful to have Kim return to Project Alive in an official capacity. While she officially left the Project Alive board last year, Kim has continued to work closely with our organization, collaborated with us, and shared ideas to find ways that we can all come together to support our community. I am glad to have Kim's advisory role honored in this way," says Kristin McKay, President and Executive Director of Project Alive.

Dr. Stephens served as President of Project Alive 2019 through 2023. During her time in this role, she led the path to collaboration with pharmaceutical companies to assist in patient-centered clinical trial design, worked alongside other organizations to get Hunter syndrome on the RUSP, and worked closely with the community. Dr. Stephens has become a much sought-after speaker and advocate and has spoken at multiple rare disease conferences and events. For the newly diagnosed families, she is a mentor and resource and provides the support needed in that most stressful time.

"It is a great honor to be named an emeritus board member. Project Alive holds a special place in my heart and will always be part of me. I'm proud of our work together as a Hunter syndrome community suring my years serving as president. It's wonderful to see Project Alive growing and expanding its mission under Kristin," states Dr. Kim Stephens. 


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October 26, 2024

WonderFall Family Festival

Project Alive and The Hunter Syndrome Foundation are teaming up to host the WonderFall Family Festival on October 26, 2024 at the Rough Rider's Stadium in Frisco, TX! This fall festival will be an inclusive, family friendly event to raise awareness about Hunter syndrome and support the work being done in research, advocacy, and community support by Project Alive.