Cystinosis Families

Meet Our Community

Although managing cystinosis is a constant challenge for Natalie and all those with this disease she is determined to live life to the fullest. It is her hope and her genuine love of life that gives us strength. She is our daily reminder of how precious life is.
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Fundraising Resources

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Cystinosis Research Foundation fundraising resources »

Partners

Our growing success is due to the outreaching of love and support from cystinosis families around the country, supporting each other in our mutual effort to cure cystinosis. We have formed partnerships with the Flerchinger family of Clarkston, Washington, the Grier family of Charlotte, North Carolina, the Partington family of Sacramento, California and the Sturgis family of Sandpoint, Idaho.
More about our foundation partners »


Save the Date for Natalie’s Wish Fundraiser– April 30th at the Balboa Bay Club, Newport Beach, CA
John Ondrasik

Join us Friday, April 30th for our annual Natalie’s Wish fundraising event at the beautiful Balboa Bay Club in Newport Beach, CA. Guests will enjoy a live performance by John Ondrasik of Five for Fighting, and a short film on cystinosis research progress. Then the bidding begins on fabulous items in our live auction, including fantastic travel and entertainment packages, jewelry and wine collections. This event is the highlight of our year, with many of our supporters and cystinosis families joining together for a night of hope and celebration in our quest to cure cystinosis. More information and invitations to come.

Join our mailing list by emailing info@cystinosisresearch.org with your contact information.