Stories of Impact


Michelle and Her Daughter Lilly

"Lilly was diagnosed with Dravet Syndrome when she was about 5 months old. The syndrome is a very rare condition due to a random gene mutation that causes drug-resistant epilepsy and other symptoms such as intellectual disability, ataxia, and problems with thermoregulation. In 2005, there were only 500 cases in the world.

I live in the rare disease world. Lots of changes have taken place getting drugs through the approval process quicker for rare diseases. My hope would be the FDA would come up with another option for people with rare diseases because time is highly important when you are dealing with a catastrophic condition.

Because of my daughter, I have been a part of numerous new drug applications. In 2012, I was asked to speak at a Dravet Syndrome meeting and presently available data on the use of cannabidiol to treat epilepsy and I ended the presentation with this: 'Desperate times call for desperate measures.'  I was involved in the regulatory aspect of drug development for the first two years and served as the liaison between the FDA and the company. It has really been very rewarding, and I am glad that there is now a drug approved and proud to have been a part of it."

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