Home / Health / Boy's Book Raises $1 Million for Rare Disease Research
Boy's Book Raises $1 Million for Rare Disease Research
4 Oct
Summary
- A six-year-old boy wrote and sold a book to fund research for his friend's rare disease.
- The book, titled 'Chocolate Bar', and related merchandise raised a total of $1 million.
- Funds supported gene therapy research and new treatments for glycogen storage disease.
A remarkable fundraising initiative began when a six-year-old boy, Dylan Siegel, decided to help his best friend, Jonah Pournazarian, who had a rare genetic disorder. Inspired by his mother's suggestion to raise money, Dylan wrote and illustrated a 14-page booklet titled 'Chocolate Bar.'
The book, which featured Dylan's descriptions of great things as 'Chocolate Bar,' was sold for $20, with matching chocolate bars also available. This project aimed to raise money for research into glycogen storage disease type 1B. The effort began modestly in late 2012, raising approximately $7,000 at a school event.
With growing attention from book fairs and media coverage, the 'Chocolate Bar' project gained significant momentum. By December 2014, the initiative had successfully raised $1 million for GSD research. This funding was directed to research labs, supporting the hiring of a geneticist and advancing gene-therapy treatments.
The disease, glycogen storage disease type 1B, affects the body's ability to process glycogen, the stored form of glucose. Fewer than 100 cases were identified in the U.S. by early 2013. Jonah's treatment required a strict, timed regimen of cornstarch doses, administered every three to four hours, including overnight.
This significant fundraising success, which expanded to involve supporters nationwide and internationally, continues Dylan's mission to find a cure for the rare genetic disorder.
