About

Meet the Joshua Frase Foundation Leadership and Advisory Board

Alison Rockett Frase

Alison 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

 

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.

Anna Buj Bello, PhD

Dr. Anna Buj Bello is a qualified MD with a PhD in Neuroscience from St. Andrews University in Great Britain. Dr. Bello currently heads one of Genethon’s research teams, as well as a translational program investigating gene therapy for the treatment of Myotubular myopathy (MTM). She has completed 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. Dr. Buj Bello has 30 articles published in various 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 

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. 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

 
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