Fundraising Events

Do you remember when you turned 16…getting your license, maybe your first car or a job? How about your first kidney transplant? Ok, probably not that. We are excited to be celebrating two major milestones with Kacy this June.

Event Date 07-27-2018

The Cystinosis Research Network has been invited to attend the Cystinosis European Conference in Berlin, Germany from July 13th – July 15th. The event is titled: From Innovative Science to Better Clinical Care.

Event Date 07-13-2018

The idea to walk a consecutive 57 miles was inspired by some fellow rare disease-rs. A handful of men were bicycling across the US in 9 days to raise funds and awareness. They beat their goal and made their story into a movie which spurred this fundraiser.

Event Date 04-26-2018

As most of you know, Jack has Cystinosis, a rare metabolic, genetic disease afflicting more than 2,000 people worldwide. We run the Cystinosis Research Network (CRN) from our home. This disease has the potential to impact all of the organ systems in the body leading to kidney failure, muscle wasting, diabetes, blindness, pulmonary deficiency, hypothyroidism, and neurological damage.

Event Date 04-19-2018

Get ready for a night of winter fun!

You are invited! Join the Moore Family for a holiday celebration you won’t soon forget.

Five years ago, Chandler’s Chance started with a road side hot chocolate stand and a little boy’s dream: to help those with Cystinosis. Chandler was diagnosed with Cystinosis, a rare genetic disease at 10 months old. Only 2,000 people in the world have Cystinosis and funding to find a cure is limited.

Event Date 12-02-2017
Event End Date 12-02-2017

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.

Thank you for your support, orders are now closed.

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

logo

CRN Newsletter Signup - Popup
  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

  2. First Name
    Invalid Input
  3. Last Name
    Invalid Input
  4. You must enter a valid email.