Who We Are

Board of Directors

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Christine Waggoner  – President, Co-Founder

Christine Waggoner and her husband Douglas Dooley founded the Cure GM1 Foundation in April 2015 in honor of their daughter Iris and all those affected by GM1 Gangliosidosis.  Christine graduated from Brown University where she studied Visual Art and Computer Science.  The combination of studies in art and technology served as a basis for her career in computer graphics and 3D feature film animation.  Founding and running Cure GM1 is a true labor of love to help bring a treatment to all those affected by GM1 Gangliosidosis.

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Douglas Dooley  – Vice President, Co-Founder

Douglas Dooley co-founded Cure GM1 with his wife Christine Waggoner in honor of their daughter Iris and all those affected by GM1 Gangliosidosis.  Doug graduated from the Ringling School of Art and Design and he is an animator.  Doug also works in the field of human robotics interaction and consults at companies such as Google and Mayfield Robotics.  Despite his professional obligations, Doug is truly dedicated to helping children such as his daughter Iris and all those affected by GM1.  Both he and his wife Christine use their artistic and technical skills regularly to further the Cure GM1 mission.

6/26/11 Berries IIMarilee Kay Leishman – Secretary

Marilee Kay Leishman studied Piano Pedagogy at Utah State University and has enjoyed singing, performing, teaching and accompanying since her early teenage years. She uses her love for music and song writing to help raise awareness for GM1. She and her husband are parents of three children, two of which have GM1 Gangliosidosis. She is now serving on the board as Secretary to help organize and support the Cure GM1 Foundation.

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Ryan Bragg -Board Member

Ryan Bragg is one of the newer members of the Cure GM1 team.  Ryan’s daughter Clara was recently diagnosed with late infantile GM1.  Upon first hearing of Clara’s diagnosis, Ryan and his wife Jenny jumped into action to help organize efforts to further the development of a cure for GM1.  Ryan brings a business and finance background to Cure GM1 and he currently serves as a Finance Director at PepsiCo/Frito-Lay.  Ryan holds an MBA Finance (University of Texas) and BBA Finance (Texas State University).    He also served as a Major in the US Army Reserve.  He served in a combat tour in Iraq and received a Bronze Star Medal.

javeyJavey de Venecia – Board Member

Javey is the newest member of the Cure GM1 Board.  His daughter Kate is diagnosed with late infantile GM1. Javey brings entrepreneurial and business experience to the board.  He started and currently runs a company which provides administrative services to leading Corporate and Commercial Real Estate Organizations and Retailers. He is also involved in another start-up which focuses on mobile content.  Apart from work, he tries to stay engaged with other organizations in Asia that cater to the needs of children with rare diseases.  Javey has an MBA from the London Business School and a Business Administration Degree from Santa Clara University.

Business and Operations Advisor

  • Mark deSouza, PhD, Entrepreneur in rare disease space, Pellepharm, MyoTherix, Dermecular, Chromaderm, Lotus Tissue Repair

Scientific Advisors

  • Dr. Alessandra d’Azzo – Genetics, St. Jude’s Children’s Research Hospital
  • Dr. Jeanine Jarnes, PharmD, Ongoing natural history study of the gangliosidoses, University of Minnesota
  • Dr. Gordon Li – Associate Professor Neurosurgery, Stanford
  • Fulvio Mavilio, PhD – Vice President Scientific Affairs Audentes, Scientific Director of Genethon, Evry, France 
  • Philip Reilly, MD, JD, Third Rock Ventures, Bridge Bio
  • Dr. Cynthia Tifft – Deputy Clinical Director, National Human Genome Research Institute
  • Michael Vellard, PhD – former VP of Research Ultragenyx, former Head of Lysosomal Biology of BioMarin
  • Gabor Veres, PhD – Vice President Preclinical Research, bluebirdbio Inc., former senior director Sangamo
  • Chester Whitley, MD, PhD, Professor, Department of Pediatrics University of Minnesota