Why Help?

Funding Ongoing Research

It is important to mention that, due to budget restraints, Dr. Lorraine Potocki and Dr. James Lupski have halted all further research of Potocki-Lupski Syndrome at their genetic laboratory at Baylor Medical College, an educational research facility in connection with Texas Children’s Hospital in Houston, TX. The Foundation would eventually like to sponsor ongoing research, fostering a partnership with professionals to further increase awareness in the medical community making it easier to help doctorsand families alike to understand the more intricate traits and qualities of this rare genetic disorder. Dr. Lupski indicated that in order to conduct one study on PTLS patients, it would cost their laboratory approximately $25,000, which the clinic and hospital can no longer afford. In order to keep the research going continuously, Dr. Lupski indicated it was cost approximately $1,000,000 per year. The Foundation is hoping to help fund this research in order for more information to be published about persons with PTLS.