The Team
Meet The Faces Behind The Foundation
The Team
Meet The Faces Behind
The Foundation
Jeff D'Angelo
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 It’s 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.
Jeff D'Angelo
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 It’s 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.
Katis D'Angelo
Vice 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 an 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 Florida.
Katis D'Angelo
Vice 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 an 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 Florida.
Stephanie Lanning
Board Member - Head Of Patient Registry for Rare-X
Stephanie Lanning’s younger son, Jett, was diagnosed with CHAMP1 in July of 2020 after many months of testing and waiting.
Her initial phone call with the geneticist left their family with more unanswered questions than they knew what to do with, leading them to discover the CHAMP1 Research Foundation.
There was no doubt that the Lanning family wanted to help create community among other affected families and push for greater research as newly diagnosed parents.
Stephanie and her husband, Troy, run a podcast for CHAMP1 families and friends called Undefeated: A CHAMP1 Podcast.
Stephanie graduated with a bachelors in science at California Baptist University. She currently works as a registered nurse in the field of oncology. There is so much more to be done for individuals diagnosed with CHAMP1 and Stephanie and her family are looking forward with hope for all that is to come!
Stephanie Lanning
Board Member - Head Of Patient Registry for Rare-X
Stephanie Lanning’s younger son, Jett, was diagnosed with CHAMP1 in July of 2020 after many months of testing and waiting.
Her initial phone call with the geneticist left their family with more unanswered questions than they knew what to do with, leading them to discover the CHAMP1 Research Foundation.
There was no doubt that the Lanning family wanted to help create community among other affected families and push for greater research as newly diagnosed parents.
Stephanie and her husband, Troy, run a podcast for CHAMP1 families and friends called Undefeated: A CHAMP1 Podcast.
Stephanie graduated with a bachelors in science at California Baptist University. She currently works as a registered nurse in the field of oncology. There is so much more to be done for individuals diagnosed with CHAMP1 and Stephanie and her family are looking forward with hope for all that is to come!
Scott Hutchings
Board Member - Digital Transformation & Technology Chair
Scott Hutchings daughter Sienna, was diagnosed with CHAMP1 in May 2022.
After receiving the diagnosis there was very little information available for the geneticist to give so after taking to Google to find out more he discovered the CHAMP1 Research Foundation.
The Hutchings family are based in Dorset, England.
Scott has a background in IT, Design & Marketing, Charity Event Planning & Fundraising.
Scott initially took on the role of maintaining the CHAMP1 Foundations websites and is now heavily involved in Marketing, Fundraising, Resource Creation and Social Media.
Scott & his wife Sarah founded CHAMP1 UK.
Scott has a background in IT, Design & Marketing, Charity Event Planning & Fundraising.
Scott Hutchings
Board Member - Digital Transformation & Technology Chair
Scott Hutchings daughter Sienna, was diagnosed with CHAMP1 in May 2022.
After receiving the diagnosis there was very little information available for the geneticist to give so after taking to Google to find out more he discovered the CHAMP1 Research Foundation.
The Hutchings family are based in Dorset, England.
Scott has a background in IT, Design & Marketing, Charity Event Planning & Fundraising.
Scott initially took on the role of maintaining the CHAMP1 Foundations websites and is now heavily involved in Marketing, Fundraising, Resource Creation and Social Media.
Scott & his wife Sarah founded CHAMP1 UK.
Scott has a background in IT, Design & Marketing, Charity Event Planning & Fundraising.
Daniele Palumbo
Board Member - Data & Research Coordination Chair
Daniele (Daniel) Palumbo’s son Tommaso (Tommy) born in 2020 was of the youngest diagnosed at 10 months old.
He and his family lives in northern Italy, between Modena and Verona.
Reaching out to the CHAMP1 Research Foundation was our immediate reaction to the diagnosis and it was the right choice.
We have recently founded the CHAMP1 Foundation Europe as we need local identity for the fundraising and advocacy.
To earn money I have fun in IT world designing & fixing infrastructures and services.
I try to be the renaissance man for the Foundation.
Daniele Palumbo
Board Member - Data & Research Coordination Chair
Daniele (Daniel) Palumbo’s son Tommaso (Tommy) born in 2020 was of the youngest diagnosed at 10 months old.
He and his family lives in northern Italy, between Modena and Verona.
Reaching out to the CHAMP1 Research Foundation was our immediate reaction to the diagnosis and it was the right choice.
We have recently founded the CHAMP1 Foundation Europe as we need local identity for the fundraising and advocacy.
To earn money I have fun in IT world designing & fixing infrastructures and services.
I try to be the renaissance man for the Foundation.
Sarah Hutchings
Team Member - Community Advisory Group Co-Chair
Sarah Hutchings daughter Sienna, was diagnosed with CHAMP1 in May 2022.
Sarah has a background in SEN having worked in SEN settings for over 10 years.
Using this experience she wants to helps CHAMP1 families by offering advice on developing communication skills and helping make families aware of the support they are entitled to.
Sarah is passionate about ensuring those with SEN get the support that they need.
Sarah Hutchings
Team Member - Community Advisory Group Co-Chair
Sarah Hutchings daughter Sienna, was diagnosed with CHAMP1 in May 2022.
Sarah has a background in SEN having worked in SEN settings for over 10 years.
Using this experience she wants to helps CHAMP1 families by offering advice on developing communication skills and helping make families aware of the support they are entitled to.
Sarah is passionate about ensuring those with SEN get the support that they need.
Merit Schlagelambers
Team Member - Community Advisory Group Co-Chair
Merit’s daughter Thorvi was diagnosed with CHAMP1 in 2022 when she was just 8 months old.
She lives with her family in Germany on the border with the Netherlands.
With a background in biology, her goal is to provide information and support to the CHAMP community and other interested parties in an easy and understandable way. Her aim is to make support options for children transparent and to listen to questions about science and therapies.
Merit Schlagelambers
Team Member - Community Advisory Group Co-Chair
Merit’s daughter Thorvi was diagnosed with CHAMP1 in 2022 when she was just 8 months old.
She lives with her family in Germany on the border with the Netherlands.
With a background in biology, her goal is to provide information and support to the CHAMP community and other interested parties in an easy and understandable way. Her aim is to make support options for children transparent and to listen to questions about science and therapies.
Patricia Aguglia Cuencas
Team Member - Marketing Chair
Patricia is a CHAMP1ON Mom, she lives with Lucca and her Family in Sao Paulo – Brazil.
She got Lucca’s CHAMP1 diagnostic when he was only one year old and found in the Foundation the support and information she needed to share with Lucca’s doctors and therapists.
Since 2020 she is working closely with the Foundation to guarantee that all the hard work the foundation is doing is being promoted in the best possible way.
She has a career in usability and web design and is responsible for the CHAMP1 Research Foundation Communications on social media, the creation of campaigns, and newsletter.
Patricia Aguglia Cuencas
