Founder and CEO, PDCD Mom, UX/UI Designer at Bobbie.

Before becoming a designer with a hyper focus on accessibility and advocacy, Frances raised hundreds of thousands of dollars as a grant writer for art, design and health equity organizations all across California.

Focus Areas: Fundraising, Social Media, Translational Research, Education, Advocacy, and Patient Registry

Founder and CFO, PDCD Dad, Sr. CPU Design Engineer at NVIDIA.

Jon graduated from UC Davis with a Ph.D. in Electrical and Computer Engineering with focus on Digital Signals and Systems and Architectures and Biomedical Imaging. Author/Coauthor on ten publications in top IEEE conference and journal papers.

Focus Areas: Fundraising, Social Media, Translational Research, Education, and Advocacy

Secretary, PDCD Grandma and former Industrial Designer.

Before becoming a rare disease grandma and advocate, Kim studied Industrial Design at Art Center College of Design and has worked with clients all over the world, including Burt’s Bees, Neutrogena, and Nestle to develop their packaging design.

Focus Areas: Fundraising, Social Media, Education, Advocacy, and Patient Registry

PDCD Mom, Genetic Sciences, Thermo Fisher Scientific

Focus Areas: Fundraising, Social Media, Translational Research, Education, and Advocacy

PDCD Mom and Account Manager, Carrier Enterprises

Focus Areas: Fundraising, Social Media, Translational Research, Education, Advocacy, Research Assets, and Newborn Screening

PDCD Mom and Licensed Practical Nurse (LPN).

Focus Areas: Standards of Care/Patient Guidelines, Newborn Screening, and Diversity Equity and Inclusion.

PDCD Mom and Business Owner

Focus Areas: Fundraising, Social Media, Education, Advocacy, Newborn Screening and Research Assets

PDCD Patient and PDCD Mom

Focus Areas: Fundraising, Social Media, Education, Advocacy, Standards of Care and Newborn Screening

PDCD Mom and CPA (inactive)

Focus Areas: Fundraising, Social Media, Education, Advocacy, Standards of Care, Patient Registry

PDCD Mom and Pre-construction Manager

Focus Areas: Fundraising, Social Media, Education, and Advocacy

PDCD Mom and Account Manager, Medtronic

Focus Areas: Fundraising, Social Media, Education, Advocacy, Standards of Care and Newborn Screening

PDCD Dad and Vice President of Business Development, Treya Partners

Focus Areas: Fundraising, Social Media, Education, and Advocacy

PDCD Mom and Registered Psychotherapist, Canada Liaison

Focus Areas: Fundraising, Social Media, Education, and Advocacy

Senior Medical Science Liaison, Amgen. Dr. DeSalvo holds a Ph.D. in Neuroscience and a BA in Molecular and Cell Biologies

Sr. Manager Field Applications, Singular Genomics. Dr. Williams holds a Ph.D. in Molecular Biology and a BS in Biology/Chemistry.

Attending physician in Mitochondrial Medicine and the Director of Biochemical Test Development at Children’s Hospital of Philadelphia

Founder and Principal, Rare Agency LLC

Connetics Consulting