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 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