Pam Crowley Andrews
Co-Founder / Executive Director
Pam is a businesswoman focusing on strategic initiatives and business development for an international consulting firm. She is also a philanthropist, a former state public health official and, as of March 10, 2016, is an NPC parent and advocate. Passionately, Ms. Andrews leads the efforts for The Firefly Fund (the Fund) as the Fund’s Executive Director. She works to oversee all fundraising efforts, as well as managing various projects for the Fund, which include building and overseeing a coalition of NPC newborn screening stakeholders from around the country. Most importantly, Pam is the proud mother of Belle & Abby Andrews.
Co-Founder / Board of Directors
Chris Andrews is an attorney at Amherst Holdings and philanthropist by day and an avid medical researcher and citizen scientist by night. Also, most importantly, he is the proud father of Belle & Abby Andrews.
President / Board of Directors
MariBen Ramsey has served on more than 25 boards of non-profit organizations at the local, state, national and international level. MariBen advises non-profit organizations in governance, board development, fund development, endowments, legal issues, planning and organizational strategies as well as philanthropic planning for individuals and families. She is the former Chief Philanthropy Officer and General Counsel for the Austin Community Foundation and a former shareholder of the Graves Dougherty Hearon & Moody law firm in Austin, Texas. MariBen is also the Founder and Principal of Ramsey Philanthropy and MariBen Ramsey Law, PLLC. She serves as President of the Board for the Firefly Fund.
Beryl “Berry” Crowley
Board of Directors / Chair, Development Board
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, Crowley 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 NPC1, which afflicts her two granddaughters Belle & Abby Andrews. Berry serves as Chair of the Development Committee for the Firefly Fund.
Lisa Connell-Crowley, Ph.D.
Co-Chair, Scientific Advisory Board
Dr. Connell-Crowley received her Ph.D. in Biochemistry from Baylor College of Medicine in Houston, Texas and completed post-doctoral work in genetics at the Fred Hutchinson Cancer Research Center in Seattle, Washington. She has worked in the biotechnology industry for more than 15 years and is a recognized expert in protein therapeutics. She is currently Head of Purification Process Design at Just Biotherapeutics in Seattle, Washington, a startup with a mission to make protein therapies affordable by dramatically lowering the cost of development and manufacturing. Dr. Connell-Crowley was previously a principal scientist at Amgen, where she led a group of scientists in development of several antibodies and Fc fusions products in early and late stage development, including Enbrel. She has over 20 publications in subjects related to biochemistry, genetics, process development, and viral safety. More importantly, Lisa is the big sister of Firefly Fund’s co-founder, Pam Andrews, as well as a very a proud Aunt to Belle & Abby Andrews.
Board of Directors
Marianne Dwight, a native of south Texas, is a licensed attorney and holds a BBA in accounting, with honors, from Texas A&M University, a JD from Southern Methodist University and a Master in Liberal Arts, with honors, from St. Edward’s University.
In the role of general counsel for the Texas Treasury Safekeeping Trust Company, Ms. Dwight has personally analyzed, negotiated and approved more than 300 funds in which the Trust Company has invested. She is an Austin City Council appointee on the Integrated Water Resource Planning Community Task Force and has worked with the author of the legislation that created the State Water Implementation Fund of Texas, where the voters approved the dedication of $2 billion to support water projects in Texas. She has since created financing mechanisms to support water projects in Texas to the year 2060.
In addition to the Firefly Fund, Ms. Dwight is a board member with Affordable Central Texas, a charitable organization providing workforce housing for the Central Texas area.
Jack Gullahorn is an Austin attorney specializing in governmental relations and the laws governing ethics compliance at the state and local levels. From 2002- 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 or 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 non-profit 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. He has been married to Patti Hogan Gullahorn since 1971.
Board of Directors
Drs. Ben Machielse has served as Founder and CEO of Vtesse from its inception until April 2017, a company focused on the development of treatments of Niemann Pick Type C.
Prior to this Ben has served as Executive Vice President and Chief Operating Officer of Omthera Pharmaceuticals. During his professional career, Mr. Machielse has been involved with the development and approval of seven biologic drugs. Prior to joining Omthera, he spent 11 years with MedImmune, the last five as Executive Vice President Operations. In that role, he led the worldwide development and operations of MedImmune’s therapeutic antibodies, small molecules and vaccine products-including the development and launch of the first H1N1 vaccine product available in the United States. Prior to his tenure with MedImmune, Mr. Machielse held the position of Vice President of Quality Assurance and Quality Control for Xoma Corporation, and before that, served in various positions in manufacturing, process and analytical development for Centocor BV.
Mr. Machielse holds a Master of Science in biochemistry and a Bachelor of Science in Medical Biology from the University of Utrecht, in Utrecht, The Netherlands. He is a former member of the Board of Directors of Xencor, Inc. and Tetragenetics, Inc. He currently serves on Scientific Advisory Board of the Ara Parseghian Medical Research Foundation.
Dr. Augustine “Gus” S. Park
Board of Directors / Co-Chair, Scientific Advisory Board
Dr. Park is a graduate of Yale with a Bachelor of Science in Biology and Research in Molecular Biology. He went to Medical School at the University of Wisconsin Hospital and Clinics and his Anesthesiology Residency was completed at Northwestern University followed by a Pediatric Anesthesiology Fellowship at Children’s Memorial Hospital in Chicago, IL. He is a partner with the Anesthesia Partners of Texas and the Chief of Pediatric Cardiac Anesthesiology at Dell Children’s Medical Center where he also serves on the clinical trial team, administrating the medication, VTS-270, directly to children in Texas and surrounding states with NPC1.
Dr. Amy White, Pediatrician
Board of Directors
After attending medical school at the University of Wisconsin-Madison, Dr. White completed her residency in Pediatrics at the University of North Carolina at Chapel Hill and became Board Certified by the American Board of Pediatrics. She went on to become the attending physician in the Pediatric Emergency Department at UNC before moving to Austin in 2004. She has practiced Primary Care Pediatrics and Urgent Care Medicine in Austin since then and has served on the Executive Board of The Volunteer Healthcare Clinic.
While she hasn’t been Belle & Abby Andrews’ pediatrician their entire lives, it has been publicly noted that Dr. White played a critical role in their diagnosis as well as in their lives ever since she found Belle in her exam room with what she noticed was an abnormally large spleen in 2015. Dr. White was the first doctor to lead the Andrews Family down the path to answers they had been seeking for years. Belle & Abby Andrews now refer to Dr. White as Dr. Amy and the sisters look forward to the times that they get to go and see their favorite doctor.