We are pleased to announce the PSF Family Conference will be held Sept. 18-19, 2015 in Bethesda, MD. The conference will be held at the DoubleTree by Hilton, 1820 Wisconsin Ave., Bethesda, MD. 20814.

All hotel booking information is on the downloadable registration form below. The deadline for our group hotel rate is August 24 so please download and get your hotel room immediately.

Once you fill out the form if you wish to pay the conference fees by credit card please follow this link:






11/12/2014 LAUNCH: Proteus Foundation Patient Contact Registry.


Proteus Syndrome Foundation

The Proteus Syndrome Foundation, a 501c3 not-for-profit organization, is dedicated improving the lives of Proteus patients by funding AKT1 research. We focus on providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals.  Our ultimate goal is to find treatments to alleviate the symptoms of Proteus syndrome with the ultimate goal of finding a cure. The Proteus Syndrome Foundation (PSF) was founded in 1992 by  Barbara King, Mary Timmermann and myself, Kim Hoag.  Proteus syndrome has touched each of our lives in different ways. Throughout the years many families have come together under the umbrella of this organization. If you have found yourself on this page and have a child with PS or if you have PS please know we are here to help you find your way. Much has changed since 1990 when I gave birth to my son Alex. At that time there was not much information available and what was out there was oftentimes incorrect. Currently doctors on our Medical Advisory Board from the National Institutes of Health (NIH) have found the cause of Proteus. This leads us to a very exciting time in our journey. Pharmaceutical companies are  working with the NIH to develop treatments for PS. We are hopeful that these will be successful and available in the near future. Currently we are developing a Patient Contact Registry. This page will go live in the next couple of weeks. The PSF  contact registry will be used to inform individuals with Proteus syndrome and their guardians about:

  • discoveries about Proteus syndrome that may impact care decisions
  • opportunities to participate in research
  • opportunities to contribute data

Please check back soon for more articles, the directory and information on our site.

2014 October Newsletter click here


2014 Swing for Sunshine

The 2014 golf tournament was a very successful fundraiser raising over $25,000! Thank you to all of our sponsors for helping raise money to find a cure for Proteus syndrome. All money raised at the Swing for Sunshine will go directly to the Proteus Syndrome Foundation to support research, patient education and family support. >> Click here for more info about the 3rd Annual Swing For Sunshine


Donate to Help
Thank you for donating to the Proteus Syndrome Foundation.
Proteus Syndrome Foundation
Medical Research
Dr. Leslie Biesecker has discovered the cause of Proteus syndrome. See our FAQ section for more information.
Proteus Syndrome Foundation
Helpful Resources
Resources that help to find a cure for individuals living with Proteus Syndrome.
Proteus Syndrome Foundation

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Alex Hoag Run For Sunshine

In Loving Memory of
Alexander Hoag
7/5/90 - 9/20/99
"He did a lot in 9 short years."