Many of our readers will have heard the story of Dylan Siegel, who at age 6 wanted to help his friend Jonah Pournazarian, age 7, who had GSD1b.
So Chocolate Bar
Dylan set out to write and ilustrate a book to sell to raise funds. He pestered his parents until they gave in and got some copies printed.
Now the boys are aged 12 and 13 and here is the latest update on their inspiring story. Setting out with the lofty target of raising a million dollars, they caught the attention of the media, ending up on national TV. To date they have raised over $1.5 million for GSD research!
Dr. David Weinstein “At this point, we’ve treated six people with gene therapy and the response has been beyond anything we ever expected”. Further trials are being planned.
Read the latest udate
You can learn about their adventure on the web site of WBUR-FM, a public radio station in Boston, Massachusetts, owned by Boston University.
Top – Dylan (left) and Jonah telling a class about “Chocolate Bar”.
Bottom – Dylan shows off the first copies.
Photos courtesy of David Siegel.