Georgetown Family Tightens Reins on Rare Disease with Holiday Fundraiser


LAKE FOREST, IL.—November 15, 2017— Receiving a rare disease diagnosis can be debilitating. With a 10-month-old baby, the Moore Family found themselves in that exact situation. Young Chandler had a disease called Cystinosis. It causes cystine crystals to accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine.

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Cystinosis advocates Annie, Chandler, and Clinton Moore with Delaware Senator Thomas Carper during Rare Disease Week 2016. See video footage:

After learning about Cystinosis and developing a daily management routine requiring mounds of medication, the Georgetown family set out to raise awareness and research funds. Last year, Clinton, Annie and Chandler visited Delaware Senator Carper on Capitol Hill. In October, Clinton was elected President of the Cystinosis Research Network (CRN) supporting the 2,000 individuals and families living with Cystinosis.

At the heart of their efforts is Chandler’s Chance Christmas Palooza. It started five years ago with Chandler selling hot chocolate and has exploded into a night of magic. Hay rides, face painting, BB gun shooting gallery, Mr. and Mrs. Claus, photo booth, fire truck rides, live music from the Dirt Road Outlawz and more can be found along with thousands of holiday decorations along the property. Clinton said, "It took me eight years to get started. I wasted a lot of valuable time. I really didn’t think that I could make a difference, just one person can’t possibly make a difference but I was wrong because now we are reaching 500 attendees so that’s a lot of awareness raised finally because I got motivated to do something."

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Clinton Moore, newly appointed CRN President, shaves head in support of Cystinosis patients also battling cancer.

The family friendly event is free of charge with donations benefitting the CRN. The Moore Family is hoping to top their record, setting a goal of 600 attendees. For more information, visit

Event Details
Chandler’s Chance 5th Annual Christmas Palooza for Cystinosis
Saturday, December 2nd 5:30pm- 9:00pm
24062 Peterkins Road, Georgetown, DE 19947
Cost: $0

Media contact:
Follow up interviews and photos available through Clinton Moore at This email address is being protected from spambots. You need JavaScript enabled to view it.. You can find the CRN on Facebook at, Twitter @CystinosisCRN, Instagram @CystinosisResearchNetwork, and


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