This week we give thanks for our son Dylan who wrote a book called “Chocolate Bar” (his expression for “awesome”) when he was 6 years old to raise $1 million towards a cure for his best friend Jonah’s rare genetic disease (Glycogen Storage Disease). In less than two years, Dylan has sold nearly 25k copies of his book in all 50 states and in more than 60 countries, putting us at $950,000 raised. 100% of every dollar raised goes to research. Brian Williams, Diane Sawyer, Chelsea Clinton and journalists around the world have covered the story. These efforts have:
1. Financed the hiring of a new geneticist
2. Paid for studies resulting in new gene therapy treatments
3. Kept the research facility open and on track to a cure within several years
Dylan is part of the solution to a rare genetic disease that has taken countless children’s lives since it was diagnosed in the 1970s. And what’s more, he is helping finance a gene therapy process that will have widespread global implications on other genetic diseases. The success of this cure will prove that gene therapy works and therefore charts a course to changing the face of health care.
Now that we know we can, we are on a critical mission to chart that course. First, we are trying to reach Dylan’s MILLION DOLLAR GOAL by year’s end. We need that last $50,000 to help the research team, headed by globally renowned Dr. David Weinstein at SHANDS/University of Florida, finish a final treatment process that will pave the way to clinical trials beginning in 2016. We will then raise another $2.5 million for those clinical trial efforts.
We hope Dylan and Jonah’s story inspires kids of any age everywhere to see that they too have power and can change the world. Dylan will not stop until Jonah and every child with this disease no longer suffers.
Here’s to the most chocolate bar holiday season ever!
Debra & David Siegel
Co-founders, Chocolate Bar
Learn more about the Siegel family and Chocolate Bar at their website.
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