Fundraising Events

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

Event Date 11-12-2017

Amanda Buck (Cystinosis caregiver) and Amanda Leigh (adult living with Cystinosis) curated Cystinosis experiences from a range of perspectives across the community. Proceeds from book sales will benefit the Cystinosis Research Network.

Event Date 08-11-2017
Learn about Josie's Cystinosis Journey and support her hope for a cure.
Event Date 07-20-2017

ornament fundraiser

Own a hand-crafted ornament created by artist Lee Knaus, a young man living with Cystinosis. The beautiful glass decorations were constructed at the Burnt Glassworks Studio in Jacksonville, Florida and are ready to adorn your home. The spectacular sun-catching colors and size (5” in diameter) also make them the perfect gift!

Hang your purchase with pride, and remember – proceeds benefit the Croce Memorial Scholarship Program helping patients in need attend CRN Family Conferences.

Cost: $30.00 plus shipping ($3.00 U.S., $10.00 outside U.S.)

Orders open through December 1, 2017 based on availability.

Event Date 06-12-2017
Event End Date 12-01-2017
Individual Price $33.00

Join us for the 2nd Annual Nemours Family Cystinosis Day followed by Chandler's Chance 4th Annual Christmas Palooza!

Chandler’s Chance was created out of hope that proper fundraising and research will soon lead to a cure. The event also honors those who have passed from this rare, metabolic disease.

The Moore Family is hosting a day filled with Cystinosis education, family bonding time, and holiday shenanigans. Come for personal access to Cystinosis expert, Dr. Grimm, a nutritionist, and networking. Stay for the fire truck rides, face painting, and Christmas festivities!

Chandler Moore

Cystinosis expert, Dr. Paul Grimm

Both events take place Saturday, December 3, 2016 in Delaware.

We ask you to RSVP for the Family Cystinosis Day and offer complimentary, local hotel accommodations. Contact Clint Moore for more information: This email address is being protected from spambots. You need JavaScript enabled to view it. and view the agenda here.

The Christmas Palooza is from 5:30pm – 9:00pm and is free of charge. See our flyer for details. Donations are appreciated and will be accepted in advance.


2nd Annual Nemours Family Cystinosis Day

Sat, December 3rd: 11am - 3:15pm
Milton CHEER Center, 24855 Broadkill Rd, Milton, DE 19968

Chandler's Chance Christmas Palooza

Sat., December 3rd: 5:30pm - 9:00pm
24062 Peterkins Rd, Georgetown, DE 19947

Event Date 12-03-2016
Event End Date 12-03-2016
may hem2016
Event Date 05-14-2016
Event End Date 05-14-2016
Paint night for peytan
Event Date 10-11-2015
Event End Date 10-11-2015

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