Running for Cystinosis

What would motivate someone to train for a half marathon in the Texas heat? A cure for Cystinosis!

Amanda grew up watching her little sister, Chelsea, struggle with this rare disease. After diagnosis they moved across the country in search of better care. Chelsea was in and out of hospitals for six years and ultimately needed a new kidney. The impact Cystinosis has had on their entire family is immeasurable. But, a kidney transplant and wedding later, Chelsea is 24 years old and doing great! She has inspired Amanda, their mother Holli, and others to join this race on behalf of all those living with Cystinosis.


Amanda says, “Having a sibling with Cystinosis and knowing other families who are affected by the disease, makes my decision to raise money for CRN that much easier.”


Help move the team closer to their fundraising goals and a cure for Cystinosis. Tax-deductible contributions can be made online or by check. When sending a check, please be sure to note "SPI Half Marathon" made out to the Cystinosis Research Network, 302 Whytegate Court, Lake Forest, IL 60045.


Join the team!

We are hoping to expand our group of runners for the South Padre Half Marathon on November 12, 2017. For details, visit or the “Running for Cystinosis” Facebook page

Goal: $1,500
Reach goal: $2,500

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Running for Cystinosis

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