Board of Directors
vice President/founder/research committee chair
Jeff D’Angelo is the Proud father of JJ. Since day one of his son’s birth he has been committed to giving him the best possible chance to succeed. After receiving a diagnosis of CHAMP1 Its been his life’s mission to fuel research in hopes for a cure and of a better life. In addition to co-founding the CHAMP1 Research Foundation, Jeff has served as a teacher, basketball coach and special needs ministry leader at his church. Jeff is a loving father and husband who is motivated daily by his son to do all he can to advocate, spread awareness, further research. You can follow more of JJs story and read blogs from Jeff at www.raisingachamp.com
President/Founder/Finance Committee Chair
Katis D’Angelos oldest son, JJ, was diagnosed with a CHAMP1 Gene Mutation in April 2018. Shortly after the discovery of her sons ultra-rare genetic disorder, she started CHAMP1 RESEARCH FOUNDATION, as a means of building the research and awareness for the CHAMP1 community. She believes that partnerships between patients, families, researchers and clinicians is essential part of understanding CHAMP1, finding treatments, and is hopeful for a cure. She brings her background as a former Bank Manager to run the day to day operations for CHAMP1 RESEARCH FOUNDATION. Katis holds a BA in Marketing Communications from the University of South Flordia. She blogs with her husband at RaisingaChamp1.com
community support chair
Stacey McPherson lives in Bannockburn, Scotland with her husband and two sons. Her eldest son Calum was one of the first to receive the diagnosis of the CHAMP1 gene mutation, When he was seven years old. With no information available about CHAMP1, She made it her mission for newly diagnosed families to have a point of contact after receiving their diagnosis and that’s when she set up the www.champ1gene.com website. This also gives newly diagnosed families a link into the CHAMP1 Facebook Group and connects them with all the other families. Stacey loves spending time with her family. She has watched Calum bloom into a very handsome young man, He has a infectious laugh. Stacey is currently juggling being home and working. She is a mum on a mission doing her best to raise awareness for the CHAMP1 community.
Fundraising & Marketing chair
Ashley has a background in retail management and a huge passion for networking.Her daughter Lily was diagnosed in April 2019 and is currently the youngest child diagnosed with a CHAMP1. The first thing Ashley did once getting Lily’s diagnosis was search for information on CHAMP1, which is where she found the CHAMP1 Research Foundation. She quickly starting connecting with other families, realizing she wasn’t alone on this journey. Ashley’s hopes are to raise awareness and funds for the CHAMP1 Research Foundation in hopes to find a cure to better the lives of all affected with CHAMP1.