Founder and CEO, PDCD Mom, Former Product Designer

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. From 2022 - 2024, Frances was a founding product designer at a leading infant formula company. As CEO of Hope for PDCD, Frances acts as a liaison between the patient advocacy, rare disease research and biotech spaces. She oversees sponsored research agreements, community outreach, board meetings, and more. In 2025, she was awarded Young Alumnae of the Year by her Alma Mater, Mayfield Senior School, recognizing her work for Hope for PDCD.

Founder and CFO, PDCD Dad, Computer Engineer

Jon Pimentel is a computer engineer and Ph.D. graduate from the University of California, Davis. He co-founded the Hope for PDCD Foundation with his wife, Frances, where they initiated the first AAV9 gene therapy project targeting PDHA1 gene mutations for PDCD. As Chief Financial Officer of the foundation, Jon oversees all financial operations, including donation processing, thank-you correspondence, donation receipts, accounting, tax filings, payments, and 501(c)(3) compliance. His work reflects a deep commitment to advancing research and providing hope for families affected by PDCD.

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

A military spouse and life sciences professional, Katy remains closely connected to translational research and is dedicated to building lasting partnerships that drive collaboration and impact. Katy is a passionate keynote speaker focused on shortening the diagnostic odyssey, advancing translational science, and accelerating access to answers for rare disease families. A major advocate for early genetic testing, she is committed to engaging newly diagnosed parents, empowering patient communities, and fostering collaboration across science, medicine, and advocacy.

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

PDCD Dad, Senior Principal, HCBS Strategies, Inc.

Andrew has dedicated his career to strengthening Medicaid systems across the country, with a focus on expanding access and choice for individuals with disabilities and older adults. In 2023, following the birth of his daughter Lily and her PDCD diagnosis, his professional and personal worlds collided. Since then, Andrew and his wife, Holly, have become active PDCD advocates- meeting with Michigan lawmakers, engaging with local, state, and national media, hosting large fundraisers for Hope for PDCD, and working to improve access to essential services and supports for families affected by disability.

Focus Areas: Medicaid System Access, Fundraising, Education, Advocacy, Newborn Screening 

PDCD Mom and Account Manager, Carrier Enterprises

Kim Higbee is an accomplished Account Manager with Carrier Enterprise, where she leverages her expertise in client relations and strategic account management to deliver exceptional service and results. She brings to the Hope for PDCD Foundation a strong background in leadership and community engagement, having previously served with the Junior League of San Diego and the Junior League of Jacksonville. Through these organizations, Kim contributed to numerous philanthropic and fundraising initiatives focused on empowering families and strengthening local communities.  In addition to her professional and volunteer work, Kim is a proud law enforcement wife and a devoted mother to her daughters, Cassidy and Harlow. As a PDCD parent, she is deeply committed to advancing awareness, research, and advocacy efforts that bring hope and improved outcomes to families affected by Pyruvate Dehydrogenase Complex Deficiency.

Focus Areas: Fundraising, Social Media, Education, Advocacy

PDCD Mom and Business Owner

Nikki Kulovitz is a parent board member for the Hope for PDCD Foundation and a member of the Mississippi Rare Disease Advisory Council (RDAC), where she advocates for newborn screening expansion and improved resources for families affected by rare diseases. With a background in healthcare and education, she combines her professional experience and personal dedication as a rare disease caregiver to drive legislative action, research funding, and family support initiatives nationwide.

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

PDCD Mom & Adult PDCD Patient, Full Time Advocate

At 2 years old, Annie’s son Wyatt lost the ability to walk overnight. His medical scare led their family on a wild journey leading to both Wyatt and Annie being diagnosed with PDCD. After learning how little there is in the way of a standard of care or genetic medicine for adults with PDCD, Annie knew she had to take a stand . She joined Hope for PDCD at its inception and has since applied for Newborn Screening in PA, fundraised over $20,000, and is an advocate for adults with PDCD. Parents and researchers work hard every day to lengthen the lives of children with PDCD. Annie’s passion is paving the way in the uncharted waters of being an adult with PDCD and advocating for change within the adult healthcare system so our kids have a safe space to grow in to.

Focus Areas: Advocacy, Standards of Care, Newborn Screening

PDCD Mom, Senior Product Manager, Amazon 

Sarah is a Senior Product Manager at Amazon and former management consultant with Accenture, where she advised global organizations on corporate strategy and operational excellence. She brings extensive experience in fundraising and community engagement through her work with Brown Ledge Camp and Alpha Phi Fraternity. As a PDCD mom, she is deeply committed to advancing awareness, advocacy, and research funding to improve outcomes for children and families affected by PDCD.

PDCD Dad, Police Lieutenant and Estate Planning Attorney

Dorian Minond is a police lieutenant and attorney whose daughter, Lydia, was diagnosed with PDCD at 5 months. His personal experience as a rare disease parent informs his commitment to advancing newborn screening, improving family support systems, and strengthening long-term planning for children with disabilities. Dorian also works on developing innovative tools to simplify and support the medical ketogenic diet for affected families. He holds a Juris Doctor from Seton Hall University School of Law and a Master of Public Administration from Rutgers University.

Focus Areas: Newborn Screening, Advocacy, Special Needs Planning, Technology Solutions

PDCD Mom, Director of Self-Performed Management at EV Construction

Layna is a devoted parent to her daughter Piper, diagnosed at 10 months old, and has been a board member on the Hope for PDCD Foundation since its inception. She is committed to raising awareness, supporting families, and advancing research. In her professional role, she serves as Director of Self-Performed Management at EV Construction, where she oversees operational efficiency and project execution. She actively engages in local advocacy with Michigan representatives and leads community fundraising initiatives to drive impact. In 2024, she traveled to Washington, DC, during Rare Disease Awareness Week to advocate for policy changes and speak directly with lawmakers. She has also been featured on podcasts and was a keynote speaker, sharing Piper’s diagnostic journey with PDCD and how faith has guided her path through acceptance and grief.

Focus Areas: Fundraising, Advocacy, Newborn Screening

PDCD Dad, Vice President of Business Development, Treya Partners

Chris is the Vice President of Business Development with Treya Partners, a management consulting firm focusing on procurement value creation for Private Equity backed companies, and a PDCD Dad to his daughter Tate. Together with his wife, Carly, he has been working to navigate the rare disease world and have been advocating for a better life for Tate and all those impacted by PDCD for over three years. Tate’s diagnosis came in utero and this has fueled Chris and Carly’s steadfast support for newborn screening so other families can have the same opportunity as them to establish a plan and give their children the best chance possible as early as possible. The annual Tate H’Open golf tournament hosted by the Tasiopoulos family in Massachusetts has raised over $150,000 for PDCD research and advocacy since inception in 2023. 

Focus Areas: Fundraising, Advocacy, Newborn Screening, Donor Recruitment

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