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Shannon Keizer

Five years ago, if you were to ask what brings me passion, I would have said “travel and adventure”. But now that I’ve reached the wise, old age of thirty, my answer is quite different. Although those things are still important, what I now find most thrilling is making a difference in lives. It’s about …

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First Inaugural Grand Gala for Aarav Raises Over $96,000

Aarav’s Time To Shine – A Night To Remember! On Saturday, December 28th over 160 people gathered at The Sutter Club in Sacramento, CA to attend the inaugural “Grand Gala” fundraiser and silent auction for Aarav’s Time to Shine. In honor of Aarav Khalasi, Aarav’s Time to Shine partnered with the Cystinosis Research Foundation (CRF) …

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Day of Hope Family Conference – April 16 – April 18, 2020

SAVE THE DATE The countdown continues! We will celebrate our cystinosis community at the Day of Hope family conference and we will renew our efforts to work together to support research that will improve the lives of our adults and children with cystinosis. CRF researchers and clinicians will present their research findings and progress. Topics …

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Aidan’s Army Golfs Fore a Cure Raises $73,000 for Research

Dear Friends: Another win for Aidan’s Army!  Over 100 friends and family members from across the country joined the fight to cure cystinosis on July 29, 2019, at Forest Lake Country Club in Bloomfield Hills, Michigan. Aidan’s Army is strong and raised over $73,000 for cystinosis research. We are forever thankful to our amazing donors …

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HopeForHayden

Hope for Hayden

Congratulations to the Kirchhof family and their community of friends for raising $36,200 for cystinosis research at their first Wine and Cheese Reception on April 28, 2019, at InVINtions, in Greenwood Village, Colorado.  The Kirchhof Story – Our daughter, Hayden, was diagnosed with cystinosis on November 28, 2018, when she was 14 months old. Over …

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LolaLogo2019

Curl For A Cure for Lola

Lola was diagnosed with cystinosis in June 2013. Cystinosis is a devastating ultra-rare disease with only 2000 cases diagnosed worldwide. By most outward appearances Lola and other children with her disease appear somewhat normal, however internally every cell within their bodies is being ravaged by the disease – even with medications over time cystinosis will …

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Natalie's Wish Celebration – Raised $4 Million For Cystinosis Research!

We are eternally grateful to our incredible Natalie’s Wish supporters, donors and cystinosis families who gathered together to celebrate the research progress we have collectively funded, the event was a record-breaking success raising more than $4 million for cystinosis research in one evening! The Natalie’s Wish Celebration was the grand finale of the three-day Day …

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