Chris Andrews
Co-Founder / Board of Directors

Chris Andrews is an attorney at the Texas Medical Board by day and a citizen scientist for various rare diseases by night. Chris is a graduate of Texas A&M School of Law. Prior to Law School, Chris worked primarily in the financial/investment industry. He has extensive experience as a broker, market analyst, and trader. Most importantly, Chris is the proud father of Belle and Abby Andrews.

Pam Andrews
Co-Founder / Executive Director

Pam is the Co-Founder and Executive Director of Firefly Fund, leading the organization’s four initiatives, including (1) support for translational medical research; (2) advancing efforts to expand newborn screening and whole genomic sequencing at birth, ensuring that any baby born with a rare disease diagnosis never has to endure the long diagnostic odyssey experienced by her older daughter Belle; (3) patient access; (4) creation of a pediatric rare disease diagnostic, research and treatment center at UT Dell Medical School.  Pam also continues her service as a Texas public health official, serving at the request of the State’s Health Commissioner John Hellerstedt, MD, as a member of the Newborn Screening Advisory Committee at the Texas Department of State Health Services. Most importantly, Pam is the proud mother of Belle and Abby Andrews.

Valerie Beesley
Director of Marketing & Communications

Valerie has over fifteen years of public relations agency experience representing health and technology companies. She drives the development and implementation of brand positioning and manages programs spanning corporate visibility, thought leadership, social media strategy and day-to-day media relations. Valerie’s Austin-focused experience includes leading award-winning earned media campaigns and heightening visibility for Austin and Portland-based health and nonprofit organizations. Before moving to Austin, Valerie led earned media campaigns for B2B and B2C technology clients with a focus on digital media, big data analytics and artificial intelligence at FINN Partners in New York City. Valerie began her career at Cohn & Wolfe supporting GlaxoSmithKline’s public relations initiatives, including the international release of landmark research and groundbreaking work in the field through entertainment media integrations with NBC’s “The Biggest Loser.” As the mother of a child diagnosed with the rare disease, HADDS (Hypotonia, Ataxia, Delayed Development Syndrome), Valerie draws inspiration, guidance and wisdom from Austin’s determined rare disease leaders and community.

Beryl Ponton “Berry” Crowley
Board of Directors / Chair, Development Board

Berry Crowley has been a public leader in the law profession since 1974, with experience as a Partner, Shareholder, Chairman, President, Trustee, Director, Executive Director, and Mentor. She broke ground as the first female President of the Texas Young Lawyers Association, and was known as the only female President for another 14 years. As the Executive Director for the Texas Center for Legal Ethics and Professionalism, Berry became a standout Speaker and Author of several publications, including A Guide to the Basics of Law Practice (Editions 2-10) and The Ethics Course (Editions 1-6). She has served on dozens of Boards and Lawyers Associations, while maintaining her own legal practice, Beryl P. Crowley, Attorney & Counselor at Law. She is an outspoken cancer survivor three times over and a mentor to cancer patients. Her newest passion is helping find a cure for NPC, which afflicts her two granddaughters Belle and Abby Andrews. Berry serves as Chair of the Development Committee for Firefly Fund.

Susan “Susie” Dudley
Board Member

Born in Tucson, Arizona at 12 moved to Fairfield, Connecticut.  Susie attended Eastern schools and college and studied in Paris. She came to Austin in 1974 to be the Dean of Girls at St. Stephen’s School. Having had a variety of interesting jobs, her favorite has been as a Realtor for over 30 years. Susie spent 25 years with Amelia Bullock Realtors and is now with Sotheby’s International Realty. She is active in the Austin community and involved with the Austin Edna Gladney Auxiliary, Austin National Science Center; Junior League of Austin, Fleur de League Garden Club, Austin Antique Club, KLRU’s Producer’s Circle, Board member and Friends of Austin City Limits, and the Firefly Fund. Susie married Salvatore Conti almost 18 years ago and have enjoyed time with their children and three grandchildren traveling, entertaining and gardening.

Alex Freeman
Director of Development

Alex has served as a nonprofit executive for over five years; four as the director of a statewide museum association focused on strengthening Texas museums and sharing best practices in nonprofit management and one year as the CEO of a West Texas art museum after the founding director announced his retirement after 38 years. Most recently, Alex has served as the founder and director of Freeman Consulting in Austin focused on nonprofit change management in the 21st century. The firm helps businesses and nonprofits think more strategically to digitally transform their organizations by using data and the latest tools and approaches to achieve operational objectives such as fostering greater productivity, generating resources, measuring success, and growing programs and audiences.

He is passionate about bringing stakeholders together to achieve shared goals and outcomes, especially in Spanish-speaking and non-traditional communities. His skills include stakeholder management, executive communications, fundraising, and team-building in the nonprofit sector.

Patricia Gray
Board Emeritus Member

Patricia Gray holds a B. A. and an M. Ed. from Mississippi State University, and an M. S. in special education from the University of Texas at Austin.  She earned her J.D. from South Texas College of Law and her LL.M. in Health Law from the University of Houston Law Center where she was Director of Research for the Health Law and Policy Institute for nine years. Prior to joining the research faculty at the University of Houston, she served as a special assistant for health policy the University of Texas Medical Branch.   She also practiced law in Galveston for 21 years, including 16 years as a partner in the Galveston firm of Yarbrough, Jameson & Gray. She was the first woman to serve as president of the Galveston County Bar Association.  She was elected six times to the Texas House of Representatives where she was twice named one of Texas 10 Best Legislators by Texas Monthly magazine.  As a member of the Texas House, she chaired the Texas House Committee on Public Health and was the House sponsor for legislation creating the Texas Children’s Health Insurance Plan.  She also chaired the Texas Sunset Commission overseeing legislative review of Texas state agencies.   Upon retirement from the legislature in 2003, she was awarded the Nathan Davis Award for Outstanding Government Service by the American Medical Association..  In 2011, she was recognized as one of Texas’ all-time best legislators when Texas Monthly included her in their 10 best Hall of Fame and Capitol Insider named her as one of the 10 best House members for the 1990’s as part of their All Star Teams for the Decades. 

She has served as an Adjunct Professor of Law at the University of Houston Law Center, and has previously served as a special member of the graduate faculty at the Institute for Medical Humanities at the University of Texas Medical Branch.   She has been a frequent presenter on health policy issues, and was an original co-author of Control Measures and Public Health Emergencies:  A Bench Book for Texas Judges. 

Jack Gullahorn
Advisory Board

Jack Gullahorn is an Austin attorney specializing in governmental relations and the laws governing ethics compliance at the state and local levels. From 2002 to 2015, he founded and then served as General Counsel and President of the Professional Advocacy Association of Texas, the only professional trade association for the Texas lobby community. Jack is a founding member of the Legislative and Campaign Law Section of the State Bar of Texas; served on the Board of Trustees and as Vice Chair of the Seton Family of Hospitals; was a board member and served two terms as chair of Saint Louise House, a nonprofit providing housing and support services to empower homeless mothers with children; and has been a member of the St. Vincent de Paul Society of St. Austin Parish since 1991. He is recognized in the 2007 – 2010 Editions of The Best Lawyers in America in the specialty of Government Relations Law.

Collin Hovinga, Pharm.D., MS, FCCP
Board of Directors

Dr. Collin Hovinga has over 20 years experience in the leadership and oversight of pediatric clinical trials. He is recognized as an expert in trial design, early phase pediatric drug research, regulatory affairs and outcomes research. He completed his Bachelor of Science Degree in Biology and Doctor of Pharmacy degrees from Creighton University in Omaha, Nebraska. After which, he pursued a Residency and Fellowship in Pediatric Pharmacotherapy with emphasis in Pediatric Neuroscience at the University of Tennessee, Memphis, LeBonheur Children’s Medical Center. He completed a second a Fellowship at the Food and Drug Administration Office of Clinical Pharmacology and a Masters of Epidemiology/Genetic Epidemiology from the University of Tennessee Health Science Center. Dr. Hovinga is an expert in pediatric pharmacology and has held appointments with the FDA’s Peripheral and Central Nervous System Advisory Committee. He has been active with leadership roles in pediatric interventional clinical trials (including the first NIH-funded pediatric stroke interventional study) and neuroprotection-disease modification drug pharmacology NIH projects. He was most recently Chair of ACCPs Practice Based Research Advisory Committee. He has been successful in creating the research trial infrastructure for multiple top-tier pediatric hospitals. He currently is the Senior Vice President of Clinical and Scientific Development at the Institute for Advanced Clinical Trials in Children and Co-Principal investigator on an FDA grant focused on improving clinical medication and advancing research in children.

Lara Keel
Board of Directors

Lara Laneri Keel has over twenty-five years of experience in and around the Texas Capitol. She was a founder and partner in the Texas Lobby Group since its inception in 2002 before striking out on her own in 2020. Lara has been representing the interests of a broad portfolio of Texas Associations and Fortune 500 Companies before state legislators, agencies, regulators and Texas policymakers (78th- 86th Legislative Sessions).  Prior to founding the Texas Lobby Group, Lara served as an in-house business lobbyist with the Texas Association of Business and Chambers of Commerce (TABCC), the state’s largest business association, and continues to serve TABCC as an Executive Committee and Board Member. During her tenure at TABCC, Keel was an expert on healthcare and employer-sponsored healthcare issues. Prior to her tenure at TABCC, Lara worked on legislative and policy issues in the Texas Senate with a deep policy and legislative understanding of Healthcare, Appropriations and Sunset Advisory Commission issues.  Raised by parents who made their living in a fourth-generation family business, Lara enjoys representing a wide spectrum of business interests at the Texas Capitol. She understands the impact that state government can have on all businesses that operate in Texas.

Hallie Klein-Immroth
Board Member

Hallie Klein-Immroth is a native Texan and a seasoned professional with over three decades of experience in the financial services industry. Hallie holds an International Business degree from the University of Texas at Austin and is currently furthering her academic pursuits with a focus on Healthcare Disparities, Diversity, and Advocacy at MD Anderson’s School of Health Professions. Throughout her career, she has honed her skills in service operations, process improvement, and strategic planning. After a successful tenure in banking, she transitioned into healthcare, driven by a passion for advocacy and a desire to make a meaningful difference in the lives of others. Beyond her professional achievements, Hallie is deeply involved in community service, co-founding the non-profit and contributing her expertise as a board member at MECA in Houston, Texas. She has also played pivotal roles in initiatives such as the MD Anderson Children’s Cancer Hospital Family Advisory Council and Supportive Care Committee, showcasing her dedication to supporting families and patients facing complex and rare diseases. The loss of her older son to cancer, stemming from Neurofibromatosis (NF1) has fueled her unwavering commitment to patient advocacy, driving her to champion the needs of those navigating similar challenges. Hallie resides in Austin, Texas, with her husband Andy, younger son Nate, and their beloved pooches Fiona and Ace, and finds joy on the tennis or pickleball court and walking the dogs.

Forbes D. Porter, M.D., Ph.D.
Scientific Advisory Board

Dr. Forbes D. Porter is a senior Investigator with the National Institutes of Health (NIH) Intramural Research Program at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Dr. Porter received his M.D. and Ph.D. degrees from Washington University in St. Louis and subsequently trained in Pediatrics and Genetics at St. Louis Children’s Hospital. He is board certified in Pediatrics and Clinical Genetics. Dr. Porter came to the NIH in 1993 as a postdoctoral fellow in Dr. Heiner Westphal’s laboratory and subsequently formed his own research laboratory in the Heritable Disorders Branch of NICHD. Dr. Porter’s research at the NIH has been focused on understanding pathophysiological processes underlying human genetic disorders in order to develop and test therapeutic interventions.

Jenny Cook Purcell

Jennifer Cook Purcell has been an attorney in Texas since 2001. She began her career as a litigator and then made the switch to real estate law, where she has practiced for over 18 years. She is the founder of the Law Office of Jennifer Cook Purcell, PLLC. Before forming her solo practice, she was privileged to practice at the law firms of DLA Piper US, Greenberg Traurig LLP, and Winstead PC, among others. She focuses her practice on a wide variety of complex commercial real estate matters. Prior to receiving her law license, she was a freelance writer and editor in New York City. Jennifer grew up in South Texas and attended St. Stephen’s Episcopal School in Austin, Texas, where she began her lifelong friendship with Chris Andrews, the magnificent father of Bell and Abby Andrews. She graduated from the University of Texas in Austin with a B.A. in Government and received her Juris Doctorate from the University of Houston Law Center. Jennifer has served on a number of boards and committees in the community, including the State Bar of Texas-Women in the Profession Committee, the Travis County Women Lawyers’ Foundation, the ULI Austin Programs Committee, and Extend-A-Care, Inc.

Sarah Reilly, MD, MPH
Board of Directors

Sarah is a pediatrician who now works in the biotech industry, specifically on developing new treatments for rare forms of cancer. She has a strong interest in public health and genetic disorders that impact children. In her free time she likes to bake, do puzzles, and go to the beach (in any season!).  She lives in Boston with her husband and two young daughters, 1 dog and 2 cats.