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Our CHAMP1 journey

I will never forget the day my son was born; I was so excited to meet my best friend. Little did I know what was ahead, and there is nothing I could have done to prepare me for what the future had in store for my family.

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The Story of the Champ1 Research Foundation

It didn’t take long for Jeff and Katis D’Angelo to realize that something was up with JJ, their newborn son. The biggest indicator that something was off was that the youngster didn’t cry. Initially, the boy was diagnosed with cerebral palsy. JJ failed to reach essentially all of his earliest developmental milestones. Despite the diagnosis,

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“Fighting For Our Champs” – Rare Revolution

Like many in rare disease, Jeff D’Angelo is in a race against time to find a treatment for his son JJ. This sense of urgency led to the formation of the Champ 1 Foundation, who are driving clinical research with the laser focused mission to improve lives of those affected by Champ 1 gene disorders.

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Read Our Founder’s Story

Motivated by a desire to make a difference to his son’s life, and the lives of others with the same condition, Jeff D’Angelo co-founded The CHAMP1 Research Foundation. He talks to RARE Revolution about his drive to accelerate research and about his hopes of achieving the ultimate goal of a treatment. Full story here

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Read Mabel’s Story

New screening helps find diagnosis for Arkansas girl with rare genetic mutation. Maebel’s version of playing, Shelly said, usually involves her standing still, watching other kids interact. In one video of a sleepover with her friends, she bounced on a bed with them, holding hands and giggling for a few seconds before moving off to

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