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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We have missed all of you, and although we hoped we would be able to meet in-person in 2021, we could not safely do so. This year, our annual Natalie’s Wish fundraiser is an interactive video program that features an 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 today. The program will be available to view and explore any time that is convenient for you. While we have faced challenges because of the pandemic, our research teams have continued to work every day to find better treatments and a cure for our adults and children with cystinosis. Thank you for your past commitment to our research program and thank you for helping us raise funds this year so that we can continue to fund ground-breaking research that will undoubtedly lead to a cure for cystinosis.

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!

The Cystinosis Research Foundation is Eternally Grateful to all its 2021 Natalie's Wish Celebration donors

$500,000 AND ABOVE

  • The Thomas Haas Family
  • Nancy and Geoffrey Stack Family Foundation

$200,000 – $300,000

  • Traci and Tom Gendron
  • The Hayde Family Trust
  • The David Pyle Family

$100,000 – $199,999

  • Name

$40,000 – $55,000

  • Name

$25,000

  • Name

$20,000

  • Name

$15,000

  • Name

$10,000 – $14,999

  • Name
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:
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We have missed all of you, and although we hoped we would be able to meet in-person in 2021, we could not safely do so. This year, our annual Natalie’s Wish fundraiser will launch on April 30th and will be an interactive video program that will feature an 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. There will be a 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.

Although the event will launch on April 30, the program will be available to view and explore any time that is convenient for you. While we have faced challenges because of the pandemic, our research teams have continued to work every day to find better treatments and a cure for our adults and children with cystinosis. Thank you for your past commitment to our research program, and thank you for helping us raise funds this year so that we can continue to fund ground-breaking research that will undoubtedly lead to a cure for cystinosis.  Stay tuned for more details and watch for your invitation in the mail!

We are grateful for your continued support to fund cystinosis research to find better treatments and a cure for cystinosis.  Together we will make Natalie’s wish become a reality! 

For questions contact Zoe Solsby, zsolsby@cysinosisresearch.org or call (949) 223-7610. 

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