Shaylee Boger was diagnosed with Pompe disease, an inherited disorder that disables the heart and skeletal muscles. Today she was honored by the Sanofi Genzyme Organization with the Torch award; which recognizes individuals who have contributed to the Lysosomal Storage Disorders community.
“I think she has done a lot for the rare diseases community and she has never done this for herself. She has done wonderful work being an advocate not only locally but regionally and nationally and has even spoken to the FDA to make the case for newborn screening for genetic testing to help identify the patients even earlier,” said John O’Malley, the Regional Director of U.S. Rare Diseases.
O’Malley and his team surprised Boger in front of her class this morning at Guthrie School. Boger is one of only four people being recognized for this award.
“There was an organization that selected nominations from all over the country. We wanted to recognize the people who have raised awareness,” said O’Malley.
Boger and her family will leave Sunday to go to Boston where she will have the opportunity to tour the Genzyme Area. She will also receive a five-thousand dollar scholarship that she can donate to a non-profit organization of her choice.
“I am excited about touring the Genzyme area, I have always wanted to do that,” said Boger.
