Stacey Maw is fundraising
CAMINO FOR CILLIAN - A 1000km for a Cure
My son, Cillian, is 4 years old and suffers from a rare disease called Cystinosis, to which there is currently no cure. This disease slowly destroys your organs and requires an extensive amount of daily medication, close monitoring and constant blood-work in order to slow its progression.
Hearing about our struggles, our family friend, Eamonn Boyle, has embarked on a 1000km journey across the coast of Spain in hopes of raising money for the Cystinosis Research Foundation (CRF) to help find a cure.
Eamonn will be starting this journey on September 25, 2023 in Irun, France and following the famous “Camino Del Norte” coastal trail to Fisterra, Spain. You can follow his journey on the “Camino For Cillian” Facebook group, where Eamonn will be posting photos and videos along the way!
All money raised will go directly to the CRF to help support ground breaking research so if you can, please support, share, and check in regularly for updates on Eamonn’s journey in honor of our son, Cillian.
More information about Cystinosis Research Foundation: Cystinosis is a rare, genetic disease that slowly destroys the kidneys, eyes, thyroid, muscles, liver, pancreas, and brain. The Cystinosis Research Foundation issues both domestic and international grants twice a year to accelerate the research process and to ensure that there is never a gap in funding new cutting-edge ideas. We are focused and determined to improve the quality of life for our patients and to find better treatments, including a cure, for our adults and children living with cystinosis.
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