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

    REGISTRATION

    Please fill out the registration form and you will be contacted with more information if needed. 
    Please select Children's Inn, Hotel or Other.
    The PSF has a lower room rate at the hotel for the nights of August 12 - 15.
    We will provide Daycare for the younger children at the conference. If you will need daycare please provide name and ages of each child. 
    Please add name and ages of each child for daycare.

    Payment Section

    Adults: $125 each
    Children (ages 5–18): $30 each – maximum charge for 2 children per family
    Additional children (ages 5–18): Free
    Children under 5: Free
    We do accept donations to help offset the cost for others to attend the conference. If you choose to donate this will be tax deductible donation. Thank you. 

    ​Click here for payment. 
    ​or to pay by check:
    Proteus Syndrome Foundation
    9296 Penobscot Ct., Colorado Springs, CO 80924

    Financial Assistance

    The PSF has a limited number of grants for financial assistance to attend the conference. If you would like to apply for a grant please check here and you will be contacted. 
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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