- December 2016 USA Newsletter
- December 2015 UK Newsletter
- Articles approved by the Proteus Syndrome Foundation
- Assessment and management of the orthopedic and other complications of Proteus syndrome
- 2014 October Newsletter
After 15 years of research Dr. Biesecker’s research project had a major break through and discovered the cause of Proteus syndrome. AKT1.
I am so happy that the Proteus Syndrome Foundation can be a part of this discovery. For 15 years we have sent our families to Dr. Biesecker’s research project to be evaluated, diagnosed and sometimes enrolled in the NIH protocol for Proteus. They followed our PS kids for years working with individual doctors to help the kids do well.
The PSF was able to grant Dr. Biesecker’s project $50,000 in 2010 which he used in this latest attempt to find the cause. This was due to intense fundraising and generous donations.
To make things even more remarkable AKT1 can be linked to various cancers; such as breast cancer which means that companies are already interested in finding something to stop the AKT1 gene.
There is still lots of work to be done and the PSF will continue to support Dr. Biesecker and his research until a way to stop Proteus syndrome is found.
Tonight I had to change the Proteus Syndrome Foundations Mission Statement. I had to delete the part where we are searching for the cause! That felt good!!