2023 - Celebrating CRF’s Impact and Focusing on the Future

2023 is the year to celebrate all of you! It is the start of CRF’s 20-year celebration! Following Natalie’s heartbreaking but inspiring birthday wish in 2003, “to have my disease go away forever,” the Cystinosis Research Foundation was launched. We never could have imagined how Natalie’s wish would transform our family, friends, and the entire cystinosis community.

CRF’s humble beginning started with Natalie’s wish and our family’s commitment to finding a cure. The ripple effect of her wish, however, touched other cystinosis families, who joined forces with us to create a collaborative, global movement focused on prolonging the lives of our children and adults with cystinosis and finding a cure. We had lofty goals, but when you love your child, nothing seems impossible.

Our legacy continues and the reality is that CRF is the driving force of all cystinosis research! Over the past 20 years, we have accomplished significant milestones, including two FDA approvals, numerous clinical trials and discoveries that are unlocking the mysteries of cystinosis. We have awarded 220 grants in 12 countries. We have rallied a formidable community of cystinosis friends, families, donors, and researchers around one mission: to improve the lives of those with cystinosis and to find a cure for cystinosis. We have made significant strides; however, we have more work to do and research to fund!

Join us in April for our month-long fundraiser to celebrate two decades of impact, groundbreaking research, and hope! The entire month of April is an opportunity to renew your commitment to funding lifesaving cystinosis research. The fight for better treatments and a cure must continue. Join us as we celebrate 20 years of research by donating to CRF so that we can ensure the research continues for all our beloved children and adults with cystinosis, research that will result in new and better treatments and the cure!

With grateful hearts, 
Nancy and Jeff 

the wish continues...

Dear Family and Friends,

It’s been 31 years since I was diagnosed with cystinosis, and 20 years since my parents, Nancy and Jeff Stack, started the Cystinosis Research Foundation. For me, everything started with a wish. That wish – to have my disease go away forever – was the inspiration and driving force that motivated my parents to establish the Cystinosis Research Foundation with the mission to find a cure for my disease – a disease that affects people regardless of age, race, gender, or social status.

It has been quite a journey, and on this journey, I have met so many wonderful people. Though our community is small in number, it is strong with determined and caring families, friends, researchers, and donors. Together, we have shared in each other’s pain, sorrow, joy, and celebrations.

When I made the wish so many years ago, I could never have imagined the impact it would have on our community. My wish resonated with others and has given hope to adults and children with cystinosis and their families. We have made progress, but we are not done yet!

Please join us to keep the wish alive by supporting life-saving research for all of the children and adults with cystinosis.

With love and gratitude, 

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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