Early Years, Fun Stuff, Lifestyle

Dream, Achieve, Inspire

Every two years the Cystinosis Research Network holds a family conference where families can get together for a few days, attend the many information sessions by leading experts in cystinosis patient care and children, teens and adults alike can have some fun. Sadly we have not had a chance to attend one of these conferences… Continue reading Dream, Achieve, Inspire

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Early Years, Fun Stuff, Lifestyle

Cystinosis Sunglass Day

That beautiful girl in the poster is Abbi, a fun loving soon to be 9 year old living with cystinosis. April 13th is her birthday and to celebrate for the past few years her school has done Sunglass Day, where kids could wear their sunglasses to school in honour of Abbi for a small donation,… Continue reading Cystinosis Sunglass Day

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, Medication / Medical Aides

Step Up

This Mother's Day we wanted to do something really special for Elsie's grandmas because they have been two of the most amazingly supportive, understanding and loving women not only throughout Dave and I's lives but also through this period of transition as we adjust to life with cystinosis. Although a gift can never really honour… Continue reading Step Up

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