Meet the Joshua Frase Foundation Leadership and Advisory Board
Alison Rockett Frase
Once the assistant personnel manager for a leading rock and roll band, Alison Rockett Frase is the driving force behind the Joshua Frase Foundation. A native New Yorker, Alison has always pursued the very essence of life. Prior to marrying NFL lineman Paul Frase, Alison worked in the NYC and LA fashion industries, living what some would call a fairy tale life.
On February 2, 1995, Alison gave birth to her son, Joshua—a baby so weak, he could only move his right hand. The doctors said that he wouldn’t survive the day and, in a moment that defined the rest of her life, Alison said, “Let’s give him a chance.” From that moment on, Alison became Joshua’s advocate. Before his first birthday, Alison determined that she would use her husband’s platform in the NFL to start a foundation that would one day find a cure or treatment for her son’s condition. In 1996, together with her husband, she created the Joshua Frase Foundation.
Since that time, Alison has helped raise over $6 million to fund medical research, search for a cure and raise awareness of neuromuscular-related disorders. As president of the Joshua Frase Foundation, Alison assumes the role of patient advocate, event planner, marketer, public relations manager, and administrator. In addition to raising funds for medical research and building an increased awareness of neuromuscular disorders in children, Alison is the driving force behind a network support system for parents and families dealing with neuromuscular disorders. Through this network and her website, she is able to reach out to other families worldwide who deal with the day-to-day care needed to enhance the lives of these children. She provides resources and information pertinent to the disease, as well as options and strategies to overcome the unique challenges these disorders can present. Alan Beggs, PhD, once said of Alison, “What you have done here is something that none of us, with all our years of schooling and studying, could have done. Joshua and all the Joshuas of the world are incredibly blessed to have you as their mother, protector and advocate!”
"My son Joshua's journey was a struggle between life and death. His perseverance and character gave us guarded hope that he would live and not die. He inspired us to raise awareness and forge a path to find a cure for him and his peers. Although he succumbed to the mortality of this deadly disorder, his legacy will blossom from that small seed of hope. Our new dream is that his peers will live to see a a future uninhibited by this disorder."Alison Rockett Frase
It is important to know that Alison did all of this while taking care of her son, who required 24-hour care, 365 days a year. In addition to merely keeping him alive, which in itself is a monumental task, Alison and her husband determined that Joshua would live as "normal a life as possible." And so they took him camping, on scavenger hunts in the woods, to the nearby beach, to school, on family vacations, and they even attended lock-ins at church (sleeping on the floor), so that Joshua could have every experience possible.
Today, Alison continues her work in memory of her son, who passed away on Christmas Eve, 2010. Her passion has shifted from finding a cure for her son to finding a cure for other children affected with this disorder, so that no parent has to suffer what she now faces every day—the blinding pain of losing a child. In 2015 Alison was awarded the RARE Champion of Hope – Advocacy Award by Global Genes. Alison launched The international Family Registry for Centronuclear and Myotubular Myopathies in 2014. This registry is now a member of the NIH/NCATS GRDR® program and Alison is serving on the access to data committee as a patient advocacy representative.
Scientific Advisory Board
Alan Beggs, PhD
Alan Beggs is director of The Manton Center for Orphan Disease Research at Children's Hospital Boston and the Sir Edward and Lady Manton Professor of Pediatrics at Harvard Medical School. He received his AB 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 Children's Hospital since 1992.
Anna Buj Bello, PhD
A qualified MD with a PhD in neurosciences from St. Andrews University (Great Britain), Anna Buj Bello currently heads one of Genethon’s research teams, as well as a translational program investigating gene therapy for the treatment of myotubular myopathy.
Having done a post-doctoral degree at the IGBMC, France, where she worked for several years on murine models of myotubular myopathy, she joined INSERM in 2004 and has worked at Genethon since 2009. Anna Buj Bello has 30 articles published in international scientific journals.
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 from the University of Illinois and completed his pediatrics residency and cardiology fellowship as well as his post-doctoral training in biological chemistry at the Johns Hopkins Hospital. He joined the University of Florida in 1997 and is now the Early and Christy Powell University Chair in Gene Therapy and Genetics Research.
Anne Rutkowski, MD
Dr. Anne Rutkowski is the director of the Congenital Muscle Disease International Registry (CMDIR), co-founder and chair of Cure CMD and an emergentologist at Kaiser Southern California Permanente Medical Group (SCPMG). She is a published clinical expert in congenital muscular dystrophy (CMD). She currently co-leads clinical research activities at both the National Institutes of Health (Congenital Muscular Dystrophy Comparative Outcome Measure Study) and Kaiser SCPMG.
As chair of Cure CMD, she has overseen over $800,000 in research funding for CMD translational research and has co-led two international scientific conferences, Therapeutic Targets in CMD (Atlanta, 2009) and the Myomatrix Conference (Reno, 2012). She established the CMDIR, the CMD BioBank at the NIGMS Human Genetic Cell Repository at the Coriell Institute for Medical Research, and CMD Traveling Local Clinics, a national and international program to bring diagnostic and care management principles to clinicians and families with congenital muscle disease globally. At Kaiser SCPMG, she co-leads a rare disease program to evaluate the efficacy of information technology support networks to improve rare disease care at the primary care and subspecialty levels.
Anthony Atala, MD
Dr. Anthony Atala is the director of the Wake Forest Institute for Regenerative Medicine, and the W.H. Boyce professor and chair of the Department of Urology at Wake Forest University. Dr. Atala is a practicing surgeon and a researcher in the area of regenerative medicine. His current work focuses on growing new human cells, tissues and organs.
Dr. Atala works with several journals and serves in various roles, including editor-in-chief of Stem Cells Translational Medicine, Current Stem Cell Research & Therapy and Therapeutic Advances in Urology; as associate editor of Journal of Tissue Engineering and Regenerative Medicine, Rejuvenation Research and Gene Therapy and Regulation; as executive board member or section editor of the Journal of Tissue Engineering, The International Journal of Artificial Organs and Current Urology Reports; and as editorial board member of Expert Opinion on Biological Therapy, Biomedical Materials, Journal of Tissue Science & Engineering, The Journal of Urology, Recent Patents on Regenerative Medicine, BMC Urology and Urology.
Dr. Atala is a recipient of many awards, including the US Congress-funded Christopher Columbus Foundation Award, bestowed on a living American who is currently working on a discovery that will significantly affect society, the World Technology Award in Health and Medicine, presented to individuals achieving significant, lasting progress, the Samuel D. Gross Prize, awarded every five years to a national leading surgical researcher by the Philadelphia Academy of Surgery, the Barringer Medal from the American Association of Genitourinary Surgeons, and the Gold Cystoscope Award from the American Urological Association for advances in the field. Dr. Atala was named by Scientific American as a Medical Treatments Leader of the Year for his contributions to the fields of cell, tissue and organ regeneration.
In 2007, Dr. Atala’s work was listed in Time magazine’s Top 10 Medical Breakthroughs and as Discover magazine`s Number 1 Top Science Story of the Year in the field of medicine. A Time magazine poll ranked Dr. Atala as the 56th most influential person of the year in 2007. In 2009, Dr. Atala was featured in U.S. News & World Report as one of 14 Pioneers of Medical Progress in the 21st century, and his work in 2010 was listed by Smithsonian magazine as one of 40 things to know about the next 40 years. Dr. Atala’s work was listed in the Huffington Post as one of 18 great ideas of 2011, and again in Time magazine as one of the Top 10 Medical Breakthroughs of 2011. He was elected to the Institute of Medicine of the National Academy of Sciences in 2011.
Dr. Atala has led or served several national professional and government committees, including the National Institutes of Health working group on Cells and Developmental Biology, the National Institutes of Health Bioengineering Consortium, and the National Cancer Institute’s Advisory Board. Dr. Atala heads a team of approximately 300 physicians and researchers. Ten applications of technologies developed in Dr. Atala's laboratory have been used clinically. He is the editor of thirteen books, including Principles of Regenerative Medicine, Foundations of Regenerative Medicine, Methods of Tissue Engineering and Minimally Invasive Procedures in Urology. He has published more than 300 journal articles and has applied for or received over 200 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
|Alison Rockett Frase||President, Joshua Frase Foundation|
|Jeffrey Dixon, Esq.||Secretary, Joshua Frase Foundation, Realtor, Ebby Halliday Realtors|
|Terri Dixon||Realtor, Ebby Halliday Realtors|
|Chad Hennings||Former Dallas Cowboy|
|Daryl Johnston||Former Dallas Cowboy and NFL on FOX commentator|
|Alex Zecca||The Raptor Group|