Proteus Syndrome Foundation

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  • PSF Home
  • About Proteus Syndrome
  • About Us
    • Who We Are
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    • Donate
    • The Jackie Johnson Sparkle Grant
  • 2026 Family Conference
  • Event Photos
    • 2026 Conference Photos
    • 2025 Swing Fore Sunshine Photos
  • Fundraising Events
    • 2026 Swing for Sunshine
  • Contact Us
  • Subscribe
  • Videos
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2026 PSF Family Conference

Here is the link to Day 2 of the PSF Conference - Unfortunately Day 1 did not record. But we have all the presenter talks (except families) from day 1. 
Day 2 Recording
bieseckerpsf10112026__-__read-only.pptx
File Size: 12273 kb
File Type: pptx
Download File

proteus_presentation__-__read-only.pptx
File Size: 1683 kb
File Type: pptx
Download File

treatments_skin_in_proteus_syndrome_2026_final.pptx
File Size: 1215 kb
File Type: pptx
Download File

tosi_psf_presentation__-__read-only.pptx
File Size: 25447 kb
File Type: pptx
Download File

Fun Photos. For professional photos follow this link: PHOTOS


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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.

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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
  • Ways to Help
    • Donate
    • The Jackie Johnson Sparkle Grant
  • 2026 Family Conference
  • Event Photos
    • 2026 Conference Photos
    • 2025 Swing Fore Sunshine Photos
  • Fundraising Events
    • 2026 Swing for Sunshine
  • Contact Us
  • Subscribe
  • Videos
  • PSF Patient Registry