About
Meet the Joshua Frase Foundation Leadership and Advisory Boards
Alison Rockett (Rockett-Frase)
Alison Rockett – Global Patient Advocate, CEO, and Founder of the Joshua Frase Foundation
Alison Rockett, a New York native and former assistant personnel manager for a leading rock and roll band, has lived a life shaped by bold transitions—from the glamour of the NYC and LA fashion scenes to the frontlines of medical advocacy. Once married to NFL Defensive Lineman Paul Frase, Alison’s life took a pivotal turn on February 2, 1995, with the birth of her son, Joshua.
Born with a severe form of congenital myopathy, Joshua was not expected to survive his first day. But Alison’s words—“Let’s give him a chance”—would define not only his life, but the mission that followed. Refusing to accept limitations, she committed herself to being her son’s fiercest advocate. In 1996, Alison co-founded The Joshua Frase Foundation for Congenital Myopathy Research, determined to use her platform, Wall Street, NFL, music industry and voice to find a cure and speak for those who could not fight for themselves.
As CEO and President of the foundation, Alison has raised over $8 million, spearheaded groundbreaking research, and built an infrastructure that attracted pharmaceutical investment in 2012 around her life's work. Her work led to proof of concept in two animal models, developed the Intellectual Property around their technology, catalyzing the development of a new biotech company and clinical trials that have already rescued 20 children from this previously fatal condition.
Under Alison’s leadership, the foundation developed the only global care guidelines for myotubular myopathies—translated into seven languages and relied on by clinicians worldwide. In 2014, she launched the International Family Registry, which played a critical role in the FDA IND filing for Pharma, a $35 million clinical contribution to their efforts.
Alison has received numerous accolades, including the RARE Champion of Hope Award for Advocacy from Global Genes. But her most enduring title is one she earned day-by-day: Mother on a Mission. Despite the 24/7 care Joshua required, Alison ensured he lived a full, joyful life—camping, going to school, and even attending church sleepovers.
Since Joshua’s passing on Christmas Eve 2010, Alison has continued her mission—not just in memory of her son, but for every child and family still facing this battle. A visionary, speaker, citizen scientist, and relentless advocate, she continues to fight until centronuclear and myotubular myopathies are no longer on the list of incurable diseases.
Always for the children.
Scientific Advisory Board
Alan Beggs, PhD
Dr. Alan Beggs is the Director of The Manton Center for Orphan Disease Research at Boston Children’s Hospital and the Sir Edward and Lady Manton Professor of Pediatrics at Harvard Medical School. He received his B.A. in Biology at Cornell University and his PhD in Human Genetics at Johns Hopkins University. He then completed postdoctoral fellowships in Medical Genetics at Johns Hopkins University and in Clinical Molecular Genetics at Harvard Medical School. He has directed an independent research laboratory in the Genetics Division at Boston Children's Hospital since 1992.
Martin K. Childers, DO, PhD
Dr. Martin “Casey” Childers is a professor at the University of Washington. His clinical interests include neuromuscular medicine and Botox injections for spasticity and cervical dystonia. Dr. Childers is also an investigator with the UW Institute for Stem Cell and Regenerative Medicine. His research is related to muscle diseases, particularly X-linked myotubular myopathy (a very rare form of muscular dystrophy) and Duchenne muscular dystrophy. Dr. Childers completed his medical education at Western University of Health Science in Pomona, California, and his residency at University of Missouri, Columbia.
Barry Byrne, MD, PhD
Dr. Barry Byrne is a clinician scientist who is studying a variety of rare diseases, with the specific goal of developing therapies for inherited muscle disease. As a pediatric cardiologist, his focus is on conditions that lead to skeletal muscle weakness and abnormalities in heart and respiratory function. His group has made significant contributions to the understanding and treatment of Pompe disease, a type of neuromuscular disease due to glycogen storage in motor units. The research team has been developing new therapies using AAV-mediated gene therapy to restore muscle function in Pompe and other inherited myopathies. His group at the Powell Center has also established a series of new methods for large-scale AAV clinical manufacturing. He is the associate chair of pediatrics and director of the University of Florida Powell Center. He obtained his BS degree from Denison University, his MD and PhD
Anthony Atala, MD
Dr. Atala, MD is the Director of the Institute for Regenerative Medicine, and Chair of Urology at Wake Forest University. He is Editor in Chief of Stem Cells Translational Medicine and BioPrinting. Dr. Atala is a recipient of the US Congress funded Christopher Columbus Award, the World Technology Award in Medicine, the Samuel Gross Prize, the Innovation Award from the Society of Manufacturing Engineers, and the Edison Science/Medical Award. He was elected to the National Academy of Medicine in 2011, and to the National Academy of Inventors in 2014. His work was listed twice in Time Magazine’s top 10 medical breakthroughs of the year. He was named by Scientific American as one of the world’s most influential people in biotechnology in 2015. He also received the Innovator of the Year Award from R & D Magazine in 2016. Dr. Atala has led several NIH working groups and was the Founder of the Regenerative Medicine Foundation. He heads a team of over 450 researchers, and twelve applications of technologies developed in his laboratory have been used clinically. He is editor of 14 books, has published over 500 articles and has applied for or received over 250 national and international patents.
Translational Advisory Board
Mostafa Analoui, PhD, is head of Healthcare and Life Sciences at The Livingston Group (New York, NY). Previously, he was the senior director at Pfizer Global Research and Development. Dr. Analoui is actively involved in investment, management and scientific/business development of nanotechnology, drug discovery/development, diagnostic imaging and global strategies.
While at Pfizer, he was the site head for Global Clinical Technology in Groton and New London, a division focusing on emerging technologies for development and validation of biomarkers and diagnostics for drug development. Prior to joining Pfizer, Dr. Analoui was the director of Oral and Maxillofacial Imaging Research, associate professor of radiology at Indiana University, and associate professor of biomedical engineering and electrical and computer engineering at Purdue University. He was also president and CEO of Therametric Technology, Inc. He received his PhD from Purdue University, followed by a post-doctoral fellowship at IBM TJ Watson Research Center in New York.
In addition to industry leadership in biomedical and technology fields, he consults and lectures in the US, Europe and Asia. He has also served on various scientific, regulatory and business advisory committees and boards, including NIH, NSF, PhRMA, NASA and OECD. Dr. Analoui has authored over 130 publications, including journal articles, book chapters and technical reports. He is senior member of IEEE, SPIE and RSNA.
He currently serves as board member of VirtualScopics (NASDAQ: VSCP), Calando Pharmaceutical (NASDAQ: ARWR), PharmaNova, BEACON (Biomedical Engineering Alliance and Consortium) and NanoBusiness Commercialization Association.
Jon Obermeyer has advised over 800 high-growth ventures and middle-market companies in the life sciences, technology and technology-enabled sectors. He has held responsibility at all corporate levels, including division P&L, senior management and as operating company owner and president. Jon previously served as interim executive director of the Regenerative Medicine Foundation, director of national outreach for the Wake Forest Institute for Regenerative Medicine, and in 2009, helped found the Alliance for Regenerative Medicine.
Tom Clarkson has served as senior management at multiple startup companies and has extensive experience in developing high-tech products for emerging industries, new venture creation, and entrepreneurship. In addition to his position with the Innovation and Entrepreneurship Initiative, Mr. Clarkson is an adjunct professor at the Wake Forest University Business School, where he teaches Commercializing Innovation, New Venture Planning, and Entrepreneurial Marketing.
Previously, he was CEO of Otothera, a medical device company startup in the hearing area, and vice president of marketing/business development at startup Kalon Semiconductor, an ultra-wideband wireless semiconductor new venture. Before that, Mr. Clarkson was vice president of marketing at Coradiant, an early stage manufacturer of performance monitoring equipment for data centers. Prior to those positions, he participated in strategic planning in the Intel Wireless Networking Group (WNG) responsible for planning in the 802.11 Wi-Fi and 802.16 WiMAX markets. While at Intel, Mr. Clarkson was also responsible for 802.11 external marketing at the division level, third-party business development, GM for an internal startup to develop Internet television, and director of marketing for the Network Equipment Division. Before being acquired by Intel, he was vice president of marketing at networking equipment startup IPivot.
Prior to IPivot, Mr. Clarkson was founder and vice president of marketing of joint venture between Microsoft and QUALCOMM (Wireless Knowledge), vice president of business development for wireless data and vice president of marketing/sales for Eudora at QUALCOMM. Prior to QUALCOMM, he was vice president of multimedia marketing at emerging company Brooktree and was founder and chairman of startup Graphic Software Systems (GSS) in Portland, Oregon. Mr. Clarkson has also been a software engineer at Tektronix and was for a time lead programmer on the Galileo spacecraft command and data subsystem at Jet Propulsion Laboratory. He has a BA in physics from Wake Forest University and MS in computer science from the Georgia Institute of Technology.
Board of Directors ~ JFF's Influencers
Alison Rockett -Frase ~ Co-Founder, President, Executive Director
Paul Frase ~ Co-Founder JFF, Secretary
Sean Klinkowize ~ Senior Managing Director, Business Development GlobalSource Partners
Angelica Townshend ~ Warrior Mother of an affected child, JFF's Educational Advisory Board
Farhan Merchant
Edward Costa - Las Carneros Resort and Spa, GM
Kate Kelley
Scott Grant