Fundraising Events

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
Event Date 08-29-2015
Event End Date 08-29-2015

cystinosis 5k image02
This year the 9th annual Cystinosis Charity Golf event has a personal connection to C.H. Robinson. On June 6th 2015 Lola Long, daughter of Information Technology Manager Jim Long will be our honored guest. Lola was diagnosed in 2013 with cystinosis. I am privileged, as a member of the CRN board, to have assisted Jim and his wife Melissa connect with CRN. Over the last few months Jim and I have spoken about the event and how his family could be involved. While I know the gauntlet of managing expenses is always present in business and our personal lives, I ask for your consideration this year to participate in any way you can. 

We are no longer accepting registration for this event

Event Date 06-06-2015
costumecraziesflyer

We are no longer accepting registration for this event

Event Date 04-25-2015
Event End Date 04-25-2015

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