Hadley Alexander
Hadley Alexander
“Hearts for Hadley has held three separate fundraising events at local wineries and a brewery for cystinosis research.”
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Isaac Andrews
Isaac Andrews
“His laugh, smile and storytelling ability impacts every person who is lucky enough to meet him.”
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Seth deBruyn
Seth deBruyn
“We believe that children like Seth will soon know a life free of disease and suffering.”
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Brooke Emerson
Ethan Fenn
Ethan Fenn
“To Ethan, cystinosis is just a part of his life. It will not keep him down, nothing will.”
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Tina Flerchinger
Tina Flerchinger
“Tina has overcome many obstacles with her strong faith, courage, and determination.”
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Collins Galloway
Collins Galloway
“Collins turned six in June 2025! She’s now in kindergarten, has started a dance class, and still loves playing tennis and golf. Her strength and joy inspire us every single day.”
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Zoé Goulet
Zoé Goulet
“Attending the CRF’s Day of Hope in California was a turning point for us. We were deeply moved by the passion and transparency of this community.”
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Landon Hartz
Landon Hartz
“He has this beautiful gift of accepting himself exactly how he is and striving for a life that is even better.”
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Sierra Hub
Sierra Hub
“For new parents with children with cystinosis, it may seem hard to believe (as it was with us) but things do get better.”
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Sam & Lars Jenkins
Sam & Lars Jenkins
“Cystinosis has unveiled a whole other world of human struggle, service, and love.”
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Josie Kanupke
Shannon Keizer
Aarav Khalasi
Hayden Kirchhof
Jake Krahe
Jake Krahe
“In 2008, Jake was diagnosed with cystinosis, a rare metabolic disease that affects approximately 500 children and young adults in the U.S.”
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Lola Long
Lola Long
“I'm thankful for my family and friends who continue to support me to live my healthiest and happiest life!”
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Ayla and Otto Maher
Ayla and Otto Maher
"Sometimes cystinosis can feel all-consuming, whereas at other times, it is very much in the background."
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Isla McAllister
Isla McAllister
“We look forward to giving back to cystinosis research and help this community that has been so supportive to us.”
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Aidan O'Leary
Aidan O'Leary
“Aidan wakes up every day with a huge smile on his face, happy to conquer another day.”
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Henley Parsel
Henley Parsel
“She is finally able to have more time playing, is crawling all over, standing, growing, and always happy.”
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Jenna & Patrick Partington
Jenna & Patrick Partington
“It is awe inspiring to consider what is happening in this community. We are forever grateful for your loving support.”
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Sofie Sos-Finucane
Sofie Sos-Finucane
"This kid LOVES life.” I have never met anyone who lives every day with such joy.
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Charlie Simpson
Charlie Simpson
“Please share Charlie’s story with anyone interested in learning more about this very rare disease and the efforts to cure it.”
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Emma Suetta
Henry Sturgis
Henry Sturgis
“People are looking for a way to help others, people are good, and people want to Fight for Hank.”
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Lily Beauregard
Keegan Manz
Keegan Manz
“His personality lights up our world and is so contagious people cannot help smiling when in his presence.”
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Maddie Lawrence
Maddie Lawrence
“I need to know that my daughter and all other cystinosis warriors can live a full life.”
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