The founding of BVVL International:
BVVL International was created in June 2008 as the medical-minded arm of the Thisbe and Noah Scott Foundation, Inc. Through the BVVL International web site, numerous new families affected by BVVL have been discovered. We are working to expand awareness of the disease to give all families an opportunity to participate in BVVL research.
With the help of the Genetic Alliance, the Scotts secured a researcher at the NIH (National Institutes of Health) for the sole purpose of isolating the BVVL gene. Once the first candidate BVVL gene was discovered, the Thisbe and Noah Scott Foundation then began formulating a grant to Harvard University. This research will be ongoing into 2013 with potential to carry it further depending on the initial findings.
Visit www.bvvlinternational.org for more information.