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Project Alive
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Project Alive

http://projectalive.org/
Last activity: 22.08.2025
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Categories: EdTechIndustryLegalTechMediaPublicResearchSocialVoice
Project Alive exists to find a cure for Hunter syndrome through research and advocacy, and provide education and resources to the Hunter syndrome community. Project Alive (formerly named Saving Case & Friends) is a strong and powerful voice for children and adults with Hunter Syndrome, bringing together Hunter Syndrome families and advocates with researchers, industry, and regulators, funding the most promising research with potential for in-their-lifetime treatments, assisting researchers and industry with designing research studies with the most promise for our community, and advocating for the most effective and efficient system of clinical research, evaluation, and approval. Project Alive leverages its resources to: - Advocate and raise funds for research funding and progress toward a cure; - Encourage efficiency and effectiveness in clinical trials of medications to treat or cure Hunter Syndrome; and - Advance public understanding of Hunter Syndrome, its symptoms, the need for early diagnosis and treatment, and the need for research, via traditional and social media efforts, grassroots campaigns, and public advocacy efforts.
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2.9K /mo.
Mentions
10

Mentions in press and media 10

DateTitleDescription
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Aug 6, 2025Project Alive Urges FDA to Prioritize Approvals for Life-Saving Rare Disease TreatmentsProject Alive is fighting for a solution to Hunter Syndrome, also known as MPS II. The organization is reaching out to the FDA for support CRESTLINE, CA, UNITED STATES, August 6, 2025 /EINPresswire.com/ -- Kristin McKay, President and Execu...
Apr 7, 2025Hunter Syndrome Families Gather for 'Building a Future Together' Conference & 'Cure Within Reach' Gala in Chapel HillProject Alive's Executive Director Kristin McKay and her son Charlie. Determined organizations unite with a singular purpose. CHAPEL HILL, NC, UNITED STATES, April 7, 2025 /EINPresswire.com/ -- Families affected by MPS will come together on...
Dec 30, 2024Muenzer MPS Research and Treatment Center to Host Advisory Council Meeting in Chapel Hill on January 7, 2025Project Alive CEO Kristin McKay with her husband Matthew & son Charlie Tour the new treatment center. CHAPEL HILL, NC, UNITED STATES, December 30, 2024 /EINPresswire.com/ -- — The Muenzer MPS Research and Treatment Center, located at th...
Oct 15, 2024Project Alive: Works with Hunter Syndrome FoundationDJ Dominic gets ready to spin The Wonderfall Family Festival Will illustrate that unity. REDONDO BEACH, CA, UNITED STATES, October 15, 2024 /EINPresswire.com/ -- The Hunter Syndrome community is comprised of numerous local organizations tha...
Sep 26, 2024Project Alive: The Organization Continues to Make ProgressThe McKay family including Project Alive CEO Kristin McKay The Wonderfall Family Festival Will Magnify That Hope. FRISCO, TX, UNITED STATES, September 26, 2024 /EINPresswire.com/ -- – Project Alive in conjunction with the Hunter Syndrome Fo...
Sep 2, 2024Project Alive: A Beacon of Hope for Hunter SyndromeThe Wonderfall Family Festival Will Magnify That Hope. FRISCO, TEXAS, UNITED STATES, September 2, 2024 /EINPresswire.com/ -- – Project Alive is excited to announce the Wonderfall Family Festival. This vibrant fall event set to take place on...
Jun 12, 2024Project Alive Announces Strategic Partnerships to Advance Hunter Syndrome Research and Support FamiliesCharlie McKay celebrates his birthday with his mom Kristin. Action for Aidan and MPS Masterclass Join Project Alive LOS ANGELES, CALIFORNIA, UNITED STATES, June 12, 2024 /EINPresswire.com/ -- — Project Alive, a leading nonprofit organizatio...
May 6, 2024MPS AWARENESS DAY IS ON WEDNESDAY, MAY 15, 2024 : FOCUS ON HUNTER SYNDROMECharlie McKay celebrates his birthday with his mom Kristin. LOS ANGELES, CALIFORNIA, UNITED STATES, May 6, 2024 /EINPresswire.com/ -- Project Alive is an inspiring source for families and boys affected by Hunter Syndrome. MPS Awareness Day ...
Feb 26, 2024RAISING AWARENESS FOR RARE DISEASE DAY: FOCUS ON HUNTER SYNDROMEProject Alive VP, Kyle Underwood goes to Washington, DC to lobby for support for rare diseases day. LOS ANGELES, CALIFORNIA, UNITED STATES, February 26, 2024 /EINPresswire.com/ -- Project Alive a leading advocate for rare diseases, proudly ...

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FAQ about Project Alive

What has the press written about Project Alive?

Parsers VC has collected 10 articles mentioning Project Alive, among them “Project Alive Urges FDA to Prioritize Approvals for Life-Saving Rare Disease Treatments” (Aug 6, 2025) and “Hunter Syndrome Families Gather for 'Building a Future Together' Conference & 'Cure Within Reach' Gala in Chapel Hill” (Apr 7, 2025).

Is Project Alive still active?

Yes, Project Alive is active; its latest activity on Parsers VC dates from Aug 22, 2025.