As the President of NPKUA, Rhonda is a dedicated and influential leader in the PKU community and has been involved with NPKUA since its inception. Rhonda’s enduring commitment to NPKUA evidences her passion for improving the lives of individuals with PKU. Her extensive experience and involvement began when her second son was born with PKU and she began leading Children’s PKU Network, the only national organization for PKU at the time. She and her husband, Chris, have three adult sons, two with PKU. Since the beginning of NPKUA, she has provided her valuable insights and expertise in guiding the organization’s mission and initiatives including creating the Registry and having a leading role in the Scientific Advisory Committee. Under her leadership, the NPKUA continues to make significant strides in supporting PKU individuals and their families.

As the Vice President of the NPKUA, Beth brings her extensive experience as a certified professional patient advocate in life sciences to the NPKUA. She has expertise in strategic planning, patient advocacy collaborations, and strategic partnership development. Her experience in the life sciences has given her the ability to understand the emerging research in PKU, enabling her to bridge the gap between patient advocacy organizations and rare disease research institutions.

Dan joins the NPKUA Board of Directors as a seasoned life science executive with experience in finance, accounting, and operations management. Specifically, Dan has worked at emerging biotech and pharmaceutical companies developing therapies and cures for Rare Diseases, and he currently serves as the Vice President of Finance at Tevard Biosciences, a gene therapy company located in Cambridge, MA. In this role, Dan leads financial strategy and operational excellence while establishing rapport with top Universities, collaboration partners, and investors. We are so excited for Dan to bring his professional expertise to the NPKUA Board of Directors!

Alison has been an engaged advocate for the PKU community since 2003 when her daughter Tia (born with Classical PKU) turned one-year-old, and she planned the first large scale fundraising gala to benefit PKU research. Alison researched ways to help improve the quality of life for PKU patients through investing in new treatments and cure-related research. Her research led her to focus on much-needed funding for promising early development therapeutics, while also spreading awareness about the challenges of life with PKU. Over the years, she partnered with the NPKUA to found Lifting the Limits for PKU galas, held other fundraisers for PKU research, and skied across Norway in 2020 to raise awareness about the rare disease.

While her focus has been on a better life through funding new treatments and a cure, she has also spent time arguing on Capitol Hill that our government should help ensure families have the necessary medical foods and formula to prevent intellectual and physical disabilities associated with PKU. Alison has been on the NPKUA Board of Directors for three years and serves on the Executive Committee, as well as the Fundraising and Communications committees.

Dr. Susan Berry is a physician who specializes in medical genetics as a member of the Genetics and Metabolism Division in the Department of Pediatrics at the University of Minnesota. She attended medical school at the University of Kansas, then did her residency in pediatrics and fellowship in medical genetics at the University of Minnesota. She is a fellow of the American Academy of Pediatrics and the American College of Medical Genetics and Genomics, as well as the current President of the Board of Directors for the Society for Inherited Metabolic Disorders, In addition to serving on the Board of Directors at the NPKUA, she also serves on the Board at the National Organization for Rare Disease. In public policy advocacy, she is a member of the Minnesota Department of Health Newborn Screening Advisory Committee and has served on the Secretary of Health and Human Service’s Advisory Committee on Heritable Disorders in Newborns and Children. Dr. Berry brings her many accolades, significant experience, and extensive knowledge to the NPKUA’s many research and Patient Registry endeavors.

Lillian Isabella has PKU, and is a playwright and performing artist from The Bronx, NYC. Lillian has been an NPKUA board member for over four years. She’s also a co-chair of the Advocacy Committee and serves on the Governance committee.

Lillian holds a BFA in Theatre from NYU, Tisch School of the Arts. She uses verbatim documentary theatre as a vehicle to amplify “other” voices and transmute personal pain into collective power. Her plays have been produced and developed in NYC at The Tank, Cherry Lane Theatre, Metropolitan Playhouse, NYC Fringe Fest, Nuyorican Poets Cafe, The NYC Health Department, and the United Nations.

With a career background also in digital marketing, Lillian uses her extensive communications, creative, and community building experience to assist the NPKUA with achieving its advocacy goals.

Heidi is the mother of 4 children, and her oldest son, Owen, was born with PKU in 2007. Heidi is a Director for Intermountain PKU & Allied Disorders (IPAD), based in Salt Lake City, UT; IPAD provides community and support to 5 states in the intermountain region. She is passionate about improving the lives of those living with PKU by being involved with local and national activities involving rare disease. Through her role with IPAD, she has successfully lobbied for funding to cover medical formula for children with PKU in her home state of Utah. At a national level, she has lobbied extensively for the Medical Nutrition Equity Act. Heidi also has experience fundraising, event planning, writing grants and using social media to provide education and outreach for those with PKU. In addition to serving on the NPKUA Board of Directors, Heidi is an active member of the NPKUA Communications Committee and currently serves as chairperson of the NPKUA’s Affiliate Council.

David brings a career of expertise in strategic communications across the life sciences industry to the NPKUA Board of Directors. His experience includes working with biotechnology and pharmaceutical companies to launch therapies for rare conditions such as phenylketonuria, Cushing’s syndrome, cystinosis, and achondroplasia. Through these initiatives, David has worked closely with advocacy groups such as the Epilepsy Foundation, the Multiple Myeloma Research Foundation, and the Parkinson’s Disease Foundation, helping reach patient communities and developing connections among those living with rare conditions. David also serves on the NPKUA’s Communications and Fundraising Committees.

Adam is a seasoned biopharmaceutical professional with over 25 years of experience in drug development for rare diseases. He worked on the development and commercialization of 7 rare disease therapeutics while at Genzyme, Biogen, and Ironwood Pharmaceuticals. Adam also directed the research strategy and infrastructure for the IFOPA, a global patient association for FOP. Adam currently is the Founder and CEO of Viakix, an outdoor footwear company. In addition to serving on the NPKUA Board of Directors, he also chairs the NPKUA Governance Committee.

Chuck has over 30 years of commercial and general management experience in the biotechnology/pharmaceutical industry. During that time, he has held senior positions with increasing responsibilities at companies including BioMarin, GPC Biotech, and Cephalon. Most recently, Chuck was the Senior Vice President of Commercial Operations for the North American business at BioMarin where he was responsible for all US and Canadian commercial activities. During his nine plus years running the North American business at BioMarin, Chuck led teams that successfully launched and commercialized four rare disease products and managed transformational growth across the entire BioMarin portfolio. He also has extensive experience in market access, including cell, & gene therapies. We are so excited for Chuck to bring his professional experience and passion for PKU treatments to the NPKUA Board of Directors!

Christina Love has been a Registered Nurse for 18 over years with a background predominantly in the Neonatal/ NICU and the Pediatric Population. As an adult with PKU, she has a passion for giving back to the PKU community and is actively involved in spreading awareness through advocacy for the Medical Nutrition Equity Act on Capitol Hill. As a PKU adult and healthcare professional, the NPKUA is lucky to have Christina bring both her personal and professional experience to the Board of Directors!

Mark joins the NPKUA Board of Directors as a lawyer with 40 years of experience. He currently serves as the General Counsel and Executive Vice President of Attorneys’ Liability Assurance Society Ltd., a mutual company specializing in insuring and managing risk for 224 law firms with over 79,000 lawyers.  Mark also has 2 adult children with PKU.  He has served as President and on the Board of Directors for the PKU Organization of Illinois and been actively involved with the PKU community. He also has served on the Genetic and Metabolic Diseases Advisory Committee of the Illinois Department of Public Health. Mark brings his extensive personal and professional experience to the NPKUA, and we are excited to have him join the NPKUA Board of Directors.

Dr. Finkel is an adult living with PKU and a physician dedicated to diagnosing and managing rare disease. Currently a fourth-year resident physician in Pediatrics and Medical Genetics at Detroit Medical Center, Dr. Finkel is pursuing a Medical Biochemical Genetics fellowship at University of Michigan beginning in July 2024 to fulfill his dream of becoming a metabolic physician. Outside of the clinic, Dr. Finkel is a strong advocate for newborn screening as well as the PKU and rare disease communities. In addition to his role on the NPKUA Patient Registry Committee, Dr. Finkel also serves on Michigan’s Newborn Screening Technical Advisory Committee and as a board member for the Midwest Genetics Network.

Devoted to making sure all people, regardless of income or background, have access to healthcare to live prosperous and fulfilling lives, Catherine has nearly two decades of nonprofit development and management expertise. As incoming Executive Director of the National PKU Alliance (NPKUA), Catherine’s personal connection to phenylketonuria (PKU) began 12 years ago when her nephew was diagnosed. This sparked her passion for raising funds and awareness for this metabolic disorder. She is deeply committed to advocating for improved treatment options, increased research funding, and enhanced access to resources for individuals and families affected by PKU.

Catherine’s extensive career in nonprofit leadership includes serving as the Executive Director of the Susan G. Komen Virginia Blue Ridge Affiliate and later as Senior Director of Southwest Virginia for the Virginia Breast Cancer Foundation. She dedicated herself to fundraising for breast cancer support including the creation of a Screening and Diagnostic Services Fund. Catherine’s professional journey also encompasses roles with the Jefferson College of Health Sciences and the National Multiple Sclerosis Society, where she honed her skills in organizational management and community engagement.

She holds a Bachelor of Science degree in Business Administration with special attainments in commerce from Washington and Lee University, along with a Certificate in Professional Leadership from Hollins University. Catherine resides in Roanoke, Virginia, with her husband, Chad, and their two daughters, Emmy and Caroline.

Sarah was first introduced to the PKU community in 2010 when her daughter was diagnosed at birth and has been an active community member since that time. Sarah holds a master’s degree from Columbia University and is a licensed school psychologist. She has a professional background in project management, family and community engagement, assessment, counseling, and advocating for students with disabilities in special education. She joined the NPKUA as Director of Community Engagement in 2023. Sarah lives in San Antonio, Texas with her husband and three children. She and her family enjoy cooking, spending time outdoors, and traveling.

Blair joined NPKUA in 2022 but has been part of the PKU community since 2006 when she met her son’s pre-school friend who has PKU and ended up being a carpool mate for eight years. She was the first person she knew with PKU.

Blair graduated from Indiana University and worked in marketing, advertising and corporate branding before entering the events field as a consultant for Fortune 500 corporate clients. Since 2005, she has been an active fundraiser and event organizer as a member of the Founders Auxiliary Board at Children’s National Hospital in Washington, DC.

Blair lives in the heart of Washington, DC, with her husband, Eugene, and their two pugs. In her free time, she strategizes on getting their son, who is in college, to return her calls and texts.

Susie was introduced to the PKU community through a close friend, whose son has PKU. Their son’s journey was filled with extraordinary care, determination, and resilience. He is remarkable and thriving and Susie is humbled by the opportunity to support him and the PKU community by working for the NPKUA.

In January of 2023, Susie became the Director of Development and works across various roles within the organization: helping the NPKUA support teens, adults, and caregivers; managing the organizations budgeting and forecasting; and collaborating with her team to optimize the donor database, deliver engaging events, and seek funding opportunities.

Susie earned her MBA from the University of Kansas and has over 20 years’ experience across Finance, Operations, and Strategy. She lives outside of Kansas City, MO, with her husband and a house full of teenagers. She enjoys spending time with her family on the lake, traveling to visit loved ones in Minnesota, and finding fun ways to exercise, like rollerblading and paddleboarding.

In addition to her role at the NPKUA, Elaina also assists several other non-profit organizations, including Organic Acidemia Association, Homocystinuria Network America, and Maple Syrup Urine Disease Family Support Group. In addition, she consults for several Biotech organizations’ development of treatments for metabolic genetic disorders.

Elaina previously worked at BioMarin Pharmaceutical, for 15 years, as the Executive Director of Scientific Communications, in Global Medical Affairs, responsible for publication strategy, scientific messaging, management of congress activities, and assisted in the development of clinical outcome assessment tools, clinical research protocols, and educational efforts.

Prior to that, Elaina spent 20 years as the Regional Metabolic Coordinator for the Northern California Kaiser Medical Centers. She has co-authored many publications in a variety of metabolic, genetic, and clinical journals, served as a journal reviewer, and has written book chapters on the management of genetic disorders. She is an active member in several professional organizations and a founding member of the Genetic Metabolic Dietitians International (GMDI). She is the co-chair for the organic acidemia nutrition guidelines development committee, a project funded by the Southeastern Newborn Screening and Genetics Collaborative, and published, ‘Nutrition management guideline for propionic acidemias: An evidence- and consensus-based approach’ in Molecular Genetics and Metabolism in 2019, and currently on the workgroup for developing nutritional guidelines for urea cycle disorders. She is also co-chairing the Research Dietitian Committee for GMDI. She has given numerous presentations at scientific meetings, advisory boards, and patient events on various topics related to research, treatment, education, clinical outcome assessment tools, and clinical management of genetic disorders.

Originally from Richmond, VA, Kelsey attended Virginia Tech for her undergraduate career before moving to Boston to work in an oncology research lab and complete her Masters in Genetic Counseling at the Massachusetts General Hospital (MGH) Institute of Health Professions.

While Kelsey doesn’t have a close friend or loved one with PKU, her younger sibling has a rare genetic disease, and she greatly appreciates the power of patient advocacy groups through this personal experience. Being exposed to the world of advocacy and rare disease from an early age, they quickly turned into passions and heavily influenced her career path. While Kelsey’s role at the NPKUA is focused on supporting the Registry, she combines her interests of genetics education, rare disease, and patient-centered research through the NPKUA. Outside of work, Kelsey loves to run, bake, and travel.