Results: First Annual Cystinosis Awareness Day

This was the first year our community celebrated Cystinosis Awareness Day on May 7th (5/7). This date was chosen to represent the most common cystinosis mutation: 57-kb deletion. Due to the overwhelming amount of love, well wishes and contributions received, the events tied to this day were a resounding success.


  • Over 25,000 people reached online. Cystinosis facts shared, Facebook profiles updated with the awareness ribbon and more contributed to this number.


  • 100+ donors.
  • More than $21,000 raised for cystinosis research.

awareness day1

Two special fundraisers were created to honor Cystinosis Awareness Day. Follow the links to see how our walkers and hikers faired during their ambitious journeys:

57 Miles for Cystinosis, Clinton’s Journey Journal

Hikes of Hope with Jessica

On behalf of the individuals and loved ones impacted by cystinosis, we send our heartfelt gratitude and look forward to expanding the impact we can make in 2019. Sign up for the task force by emailing Clinton at This email address is being protected from spambots. You need JavaScript enabled to view it..


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