Proteus Syndrome Foundation

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  • PSF Home
  • About Proteus Syndrome
  • About Us
    • Who We Are
  • Fundraising Events
    • Event Photos
      • 2025 Camp Photos
      • 2025 Swing Fore Sunshine Photos
  • Ways to Help
    • Donate
    • The Jackie Johnson Sparkle Grant
  • Contact Us
  • Subscribe
  • Videos
  • PSF Patient Registry

Fundraising

The PSF is solely supported by donations and through member fundraising. If you would like to host a fundraiser and need any help please contact the foundation by clicking here. 
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The Proteus Syndrome Foundation is a patient-led, global nonprofit dedicated to improving and extending the lives of individuals affected by Proteus syndrome. We accelerate progress toward effective treatments by funding AKT1 research, while directly supporting patients and families through education, community connection, and critical assistance programs. Through initiatives such as family conferences, summer camp, global peer networks, and medical support grants, we ensure that no family faces Proteus syndrome alone, and that every patient has access to the care, resources, and community they need to live fully.

​Website Design by Timberline Webworks
Alex Hoag
In Loving Memory of
Alexander Hoag
7/5/90 - 9/20/99
"He did a lot in 9 short years."
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  • PSF Home
  • About Proteus Syndrome
  • About Us
    • Who We Are
  • Fundraising Events
    • Event Photos
      • 2025 Camp Photos
      • 2025 Swing Fore Sunshine Photos
  • Ways to Help
    • Donate
    • The Jackie Johnson Sparkle Grant
  • Contact Us
  • Subscribe
  • Videos
  • PSF Patient Registry