Fun Stuff, Lifestyle

Roller Skating with Rickets

Recently I finished reading the excellent book Roller Skating with Rickets by Jessica Jondle, a woman in her thirties living with cystinosis. It recounts her life with the disease, her struggles, many accomplishments and unwavering determination to not let cystinosis define who she is or what she can do. As soon as I heard about this book… Continue reading Roller Skating with Rickets

Early Years, Fun Stuff, Lifestyle

The CRF Day of Hope Conference

This video was played during the Night of a Thousands Star's celebration last Saturday night. It was the perfect way to end the weekend Day of Hope conference put on by the Cystinosis Research Foundation and our family is so happy that we were able to be a part of it. Right away when Elsie was diagnosed… Continue reading The CRF Day of Hope Conference