A Wish Granted
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A Welcome Message from Nancy, Jeff and Natalie Stack
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Stem Cell Trial: Jordan Janz
Patient 1 Update
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Stem Cell Trial: A Parent’s Perspective
Barb and Jeff Kulyk discuss Jordan’s Journey
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Stem Cell Trial: Jacob Seachord
Patient 3 and his mother, Rocky, discuss their experience
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Stem Cell Trial Update
From CRF-funded researcher Stéphanie Cherqui, PhD
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A Newly Diagnosed Family
Brandon & Mel Parsel share Henley’s Story
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Research Update: Neuromuscular Disease
CRF-funded researcher Reza Seyedsadjadi, MD
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Research Update: Corneal Cystinosis
CRF-funded researcher Morgan Fedorchak, PhD
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Thank You to our Donors
From the CRF families
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Although circumstances once again have prevented us from safely gathering, please join us for our Natalie’s Wish Fundraiser to celebrate our CRF community and the brilliant researchers working to discover better treatments and a cure for cystinosis. 

This year, our annual Natalie’s Wish fundraiser is a video program that features a new video update on CRF, project updates from key CRF researchers, a heartwarming story from a newly diagnosed family, and an update from two of the volunteers in the stem cell and gene therapy clinical trial. You don’t want to miss the special message from our family and patient community who want to express their gratitude to all those who support our research program and our families.

We are pleased to share our fundraising program with you throughout the month of April. The program will be available to view and explore any time that is convenient for you. While we have faced continued challenges because of the pandemic, our research teams have been steadfast in their work every day to find better treatments and a cure. We have reached milestones and have made new discoveries about cystinosis but we have more work to do and more research to fund.

We are grateful for your past commitment to our research program and thank you for helping us raise funds this year so that we can continue to support ground-breaking research that will undoubtedly lead to a cure for cystinosis.

With your constant support, we have achieved what many thought was impossible – an FDA approved treatment and an FDA approved clinical trial allowing those affected by cystinosis to dream of a life free of the disease. We have brought hope to the cystinosis community, but the need to fund vital and lifesaving cystinosis research continues. 

Over the past 19 years, you have shared in the highs and lows that we have experienced along our journey toward a cure and now it is time to celebrate all that we have accomplished together!

Your dedication to Natalie’s wish — to have my disease go away forever — has united us in our fight against cystinosis and brings us closer than ever in our quest for a cure!

Thank you for joining us for our Natalie’s Wish Fundraiser to celebrate our CRF community and honor the brilliant researchers working to create better treatments and a cure for cystinosis. Your generosity and commitment to funding cystinosis research raised $1.9 million!

Your dedication to Natalie’s wish – to have my disease go away forever – has united us in our fight against cystinosis and brings us closer than ever in our quest for a cure!