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Jeff D’Angelo’s Story

Jeff D’Angelo’s Story Shortly after the birth of our son JJ it was clear there were some complications and we knew JJ was different. We went to every specialist across the country and tried every therapy under the sun. It wasn’t until he was 4 years old, we discovered he was 1 of 37 kids …

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Loving Landry Jess

The Road to Diagnosis: Jump Into Genetics Let me just tell you something. You never sit through a high school science class thinking that you’ll someday have a child who requires extensive genetic testing. If I had known, trust me, I would have paid a lot more attention. At this point in our journey I could …

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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.

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 …

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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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