2nd Annual 57 Miles for Cystinosis

12:00 PM Saturday, May, 04, 2019

14 year old, Chandler, is the only known Delaware resident living with cystinosis. This rare genetic disease with no cure traps cystine in cells and can stunt growth, cause muscle deterioration, make swallowing difficult, and lead to hyperthyroidism, kidney failure and blindness. Treatment includes dozens of pills each day and hourly eye drops.

In honor of Cystinosis Awareness Day (5/7), we’ve pledged to walk 57 miles non-stop in 24 hours. In our first attempt we were were just a few hours shy of reaching our goal. Read more from 2018 here.

We challenge you to walk by our side for at least 1 mile and/or donate today at cystinosis.org/howtohelp-donate/. We are shooting to raise $10,000 to fund research for improved treatments and a cure.

CHALLENGE ACCEPTED: Inspired by our efforts, the CRN’s Adult Leadership Advisory Board (ALAB) has pledged a collective 57 miles of walking/hiking/running. Their commitment reaches across the country and into Canada. We are honored to have their support.

The cherry on top: an Emmy-winning documentary crew is filming the event in preparation for a cystinosis documentary. Please come out and/or donate to show the world how our little community shows up big.

For questions or more information, email Clintonmoore1@aol.com. Thank you for your continued love and support!

Donate

Sussex Central High School
26026 Patriots Way, Georgetown, DE 19947

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Frequently Asked Questions

Join Clinton’s team by emailing Clintonmoore1@aol.com. Donations towards the $10,000 goal are now being accepted at cystinosis.org/howtohelp-donate

We love receiving support from all over the world. If you cannot make the in-person event, there are a number of ways to honor the walk:

  • Donate towards our $10,000 goal cystinosis.org/howtohelp-donate
  • Share the event on social media, with friends and family
  • Create your own Cystinosis Awareness Day event or fundraiser. Big or small, our team can help you. Contact Herberth at hsigler@cystinosis.org

Saturday, May 4th at 12pm

The event is 24-hours long. Participants and spectators can come and go throughout that timeframe.

We want to keep everybody safe. If you are unable to walk long distances, you can still attend the event. This is a test of endurance and having friends and family to cheer us would be very motivating.

57 Miles for Cystinosis is being hosted at the Sussex Central High School
26026 Patriots Way, Georgetown, DE 19947