"TO EXPEDITE RESEARCH THAT WILL ADVANCE THERAPEUTICS AND ACCELERATE A CURE FOR BPAN"
BPAN Warriors is committed to assisting individuals living with BPAN to realize their full potential. Since incorporating 2018, BPAN Warriors has been simultaneously focused on putting an infrastructure in place while also working to bridge the gap between scientific discoveries and meaningful progress toward treatments and a cure for BPAN. Currently there are no FDA approved treatments for BPAN and no clinical trials underway.
The newly launched BPAN RACE (Research and Collaborative Exchange), a network of scientists, researchers, patients and industry stakeholders, will be essential to help understand and prioritize the most relevant and promising research approaches for BPAN. As an organization whose aim is to fund the most promising research, it is critical that there is a consensus on what research questions are most important to answer in order to have the greatest impact for patients.
Participation in the BPAN RACE, will not only help us achieve this goal, but the knowledge gained will help guide our organization's strategic plan. Participation will also shape our entire grant making and research support program, as we anticipate that our board and advisors will have a more robust understanding of what we are looking to accomplish through our own grant making, advocacy and research initiatives. Most importantly, BPAN RACE will give us the opportunity to capitalize on the collective expertise of a network of like-minded individuals to provide meaningful outcomes for rare disease patients and families.
Founder and Board Member
Robert and his wife Sarah founded BPAN Warriors in 2018, soon after their youngest of three daughters was diagnosed with BPAN.
Robert current serves on the BPAN Warriors Board of Directors, providing support and guidance to ensure the sustainability of the organization.
Robert is a true native of Florida and was born and raised in Boca Raton, along with his five brothers (Richard, Ronnie, Russell, Rand, Ryan). If you have live in Palm Beach County, chances are you have crossed paths with one of the Chisholm boys.
Robert is a proud graduate of Cardinal Gibbons High School and an FAU Owls Alumni. He has deep roots in the Boca Raton community, where he has long been a General Contractor (American Plastering & Construction). He loves boating, fishing and spending time with his friends and family. He remains close to many of his friends from elementary school (St. Joan of Arc) and high school.
Sarah Lucas is the Chief Operating Officer of an angel investment network dedicated to providing equity capital to early-stage entrepreneurial companies with a strong presence in Florida. She is also an adjunct professor in the College of Business and Management at Lynn University in Boca Raton, FL. Her professional experience includes working at the FAU Tech Runway business accelerator and as the CEO of a start-up business.
Sarah graduated from the University of Connecticut with a B.A. in African American Studies and earned an MBA from Harvard Business School. With a background in policy, communications and strategic planning, Sarah has demonstrated aptitude in a range of professional roles, including at the White House, a Fortune 500 corporation, the United States Senate and Congress, and a privately held financial services firm.
Sarah enjoys volunteering as a mentor for start-up companies and serves on the Board of the Palm Beach Tech Association and with the City of Delray Beach Green Implementation and Advancement Board
Founder, Executive Director, Board President
Sarah is the Founder and Executive Director of BPAN Warriors, a 501 (c)(3) non-profit organization she founded in 2018 after the youngest of her three daughters was diagnosed with BPAN (WDR45). Since establishing BPAN Warriors, Sarah has dedicated her time to providing patient families access to current research and resources and most importantly connection to other families affected by BPAN. Sarah launched bpanwarriors.org in 2018 in conjunction with Global Rare Disease Day and continues to facilitate ongoing communication among the global BPAN community. She brings with her a passion for learning, a strong commitment to open and transparent communication, and a persistent desire to provide families timely, relevant and easy to understand scientific information.
SCIENTIFIC MEDICAL ADVISORY BOARD
COLLABORATING TO FIND A CURE
DR. TASSULA PROKIAS-CEZANNE
Department of Molecular Biology
Interfaculty Institute for Cell Biology
Eberhard Karls University Tuebingen
Dr. Tassula Proikas-Cezanne works as a professor for molecular biology and cell biology at the Eberhard Karls University Tübingen. Since 2004, she has served as the group leader at the Interfaculty Institute for Cell Biology, University of Tübingen. She is the head of the research group "Autophagy" which focuses on the molecular mechanism of WIPI-mediated autophagy in health, disease and longevity.
Dr. Proikas-Cezanne originally discovered the human WIPI gene and protein family, including WDR45/WIPI4. She has dedicated the last 15 years to researching the WIPI genes in health and disease. With over 50 peer-reviewed publications she is regarded as a world-renowned expert in the molecular mechanisms underlying BPAN and related autophagy-diseases.
Most Recent BPAN Related Publications
DR. LENA F. BURBULLA
Feinberg School of Medicine
Dr. Lena Burbulla is a Research Assistant Professor in the Department of Neurology at Northwestern University, Feinberg School of Medicine, in Chicago. She received her MSc in Biology from the Ludwig-Maximilians-University of Munich in 2007 and earned a PhD in Neurobiology in 2011 from the Eberhard-Karls-University in Tübingen, Germany. Dr. Burbulla then pursued a postdoctoral position in the laboratory of Dimitri Krainc at MGH, Harvard Medical School, in Boston in 2012 and followed Dr. Krainc’s team to Chicago in 2013, where she continued her research at Northwestern University.
Dr. Burbulla’s research focus is to define key molecular pathways in the pathogenesis of neurodegeneration by studying rare genetic diseases with a goal of identifying converging pathways and specific targets for therapeutic development. Using genetic Parkinson’s disease as a model, the overall objective of her work is to evaluate disease mechanisms in specific subtypes of human neurons in an age-dependent manner. Her work has been published in several scientific journals.
DR. CHRISTIAN BEHL
Johannes Gutenberg University Mainz
University Medical Center
Dr. Christian Behl serves as the Director of the Institute for Pathobiochemistry at the University Medical Center of the Johannes Gutenberg University Mainz. He is a Professor for Pathobiochemistry and Chair of the Department of Pathobiochemistry (since 2010). From 2005 to 2010, Dr. Behl served as the Director of the Interdisciplinary Center for Neurosciences of the Johannes Gutenberg University Mainz.
One of Prof. Behl’s main focuses has been on his involvement in the first dedicated research group in Germany to work on selective autophagy. Christian Behl studied Biology at the Julius
Maximilian University of Würzburg between 1982 and 1988, before going on to complete his PhD in Neurobiology in 1991. After a posting as a postdoctoral researcher in San Diego in the USA, he became Head of a Junior Researcher Group at the Max Planck Institute of Psychiatry in Munich. In 1999, he qualified as a lecturer at the Faculty of Medicine at the Ludwig Maximilian University of Munich. Since 2002, Prof. Behl has been the Chair of the Department of Pathobiochemistry at the Johannes Gutenberg University Mainz.
DR. ABIGAIL COLLINS
Children’s Hospital’s Colorado
Anschutz Medical Campus
Dr. Collins, MD is a practicing Neurologist in Aurora, Colorado at the Children’s Hospital’s Colorado Anschutz Medical Campus. Dr. Collins graduated from University of California Irvine School of Medicine in 2001 and has been in practice for 19 years. Dr. Collins is board certified in Neurology with Special Qualifications in Child Neurology.