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

UK Chapter

​Proteus Syndrome Foundation – UK Chapter
 
Chairperson and Support Group contact – Tracey Whitewood-Neal – you can contact me at [email protected] or by writing to:
 
2 Watermill Close
​Bexhill
East Sussex
Tn39 5ej
 
We are nationally registered charity – number 1077796 - https://register-of-charities.charitycommission.gov.uk/charity-search/-/charity-details/3964150
 
I set up the charity when I found out my son Jordan, born in 1995, had the condition. I run the UK branch of the Foundation, working in collaboration with Kim Green (the founder) and the team at the National Institutes of Health USA.
 
The charity provides support and guidance and can assist in putting families in touch with each other.
 
Donations
 
You can arrange a bank transfer:

National Westminster bank 
Sort code 60 10 15
Account number 62208624

Or cheque to:
 
PSF UK
The Old Coach House
St James Road
Hastings
East Sussex
TN34 3LH

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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