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help find a cure for an extremely cute kid with an extremely rare disease

Hope For Brooke

  • ABOUT BROOKE
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Second Annual Nemours Cystinosis Family Conference

December 4, 2016 Ian Pullman
Organizers and participants of the 2nd Annual Nemours Cystinosis Family Conference

Organizers and participants of the 2nd Annual Nemours Cystinosis Family Conference

Mommy worked so hard to help my Doc, JJ, and our friend Clinton Moore with the 2nd Annual Nemours Cystinosis Family conference.  The event, which was held in Sussex County, Delaware, was a huge success!  Dr. Paul Grimm, one of the leading experts in Cystinosis, was the guest speaker, and we had ten cystinosis families from all over attend the event!  It was such a positive and inspiring event, and it made me feel so good to spend time with my other friends with cystinosis.  I know Mommy and Daddy learned a lot and had fun with my friends' parents as well.

After the event, we all attended the Moore family's annual fundraiser, Chandler's Chance, which raises money for the Cystinosis Research Network.  It was an amazing and successful event - I got to take a ride in a first truck, listen to a live band, see Santa Claus and spend time with some amazing people!

Mommy was honored when asked to help plan the event, and really enjoyed every aspect from planning to setup.  She and Clinton are going to team up again next year to plan an even bigger and better event!  We are also so grateful to have Nemours DuPont Children's Hospital and, more specifically, JJ (Dr. Joshua Zaritsky), my nephrologist, spearhead these cystinosis events.  We love him, and all of the staff at the hospital who've been so loving and amazing this past year - Nemours is the best!
 

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Prefer to make a direct donation instead of gambling on the guys’ shad fishing skills? You can visit the CRF website to make a direct donation here: https://www.cystinosisresearch.org/family-stories/brooke-emerson/#donate