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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.

Jett

About Jett This is our younger son, Jett. Also known as our Jettyboy! He was diagnosed in July 2020 with CHAMP1 and he truly is our Champ! This ultra rare genetic mutation causes severe speech delay and intellectual disability, but that doesn’t stop our sweet boy! He continues to persevere, always showing us that God …

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Jeffrey Jr (JJ)

About JJ Jeffrey Jr (JJ) is our oldest son and our miracle boy. “JJ” his rare neurological condition causes severe speech disorders, seizures, cyclical vomiting, and intellectual disability. Our Son is a CHAMP1ON who fought for his life the minute he was born and we have never stop fighting for him since. He shows unconditional …

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RMF’s Bernie Siegel interviews Jeff D’Angelo founder of the CHAMP1 Foundation

Jeff D’Angelo shares his personal journey as a father and advocate for families affected by an alteration of the chromosome alignment-maintaining phosphoprotein 1 gene (CHAMP1). RMF’s Bernie Siegel supports Jeff in his mission to increase scientific and public awareness, funding and support for this rare and minimally understood diagnosis. Jeff and his wife founded the …

RMF’s Bernie Siegel interviews Jeff D’Angelo founder of the CHAMP1 Foundation Read More »

Calums Not a Typical Boy But He is Our Champion

When they first discover their child is suffering from a genetic condition many parents turn to the internet for knowledge and to connect with families going through the same experience. Full story here

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

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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