About a Foundation Building Strength

Our Story

Dana and Marc Guillet, who live in Palo Alto, CA gave birth to their third child, Ava, after an uneventful full term pregnancy. With all normal pre-natal visits and amnio testing, their expectations were set for another easy delivery and a short trip home to share Ava with her siblings, Samantha and Andrew.

At birth, Ava had some obvious problems. Her hands and feet were mal-positioned and her cry was very weak. The doctors thought because she delivered quickly she would come around within several hours. Three weeks later in the neonatal intensive care unit, Marc and Dana were still learning how to care for their child that had no diagnosis.

Ava could not take milk on her own and on occasion would stop breathing in her sleep. Ava left the hospital with a tube passing from her nose to her stomach for feeding, monitors to tell the Guillets when she stopped breathing, and a suction machine to manage her saliva which she could not swallow. At 7 months, Ava had a feeding tube placed directly through her stomach wall and a muscle biopsy confirming a diagnosis of Nemaline Myopathy.

Ava is currently walking, though she falls more than typical children. She needs assistance in climbing stairs and continues to be fed by a G-tube. She is taking small sips of water but is primarily fed by a pump with specialized formula. She still requires on-going occupational, physical and swallowing therapy on a regular basis. She attends pre–school part–time and tries to keep up with her brother and sister.

Ava is beautiful, happy, bright and certainly tolerant after all of the different doctors and procedures that she has endured.

A Foundation Building Strength was founded in 2008 by founder Marc Guillet to help Ava and all patients with Nemaline Myopathy.


Marc Guillet
Executive Director / President

Marc started A Foundation Building Strength in February of 2008 to help his daughter Ava and all patients with Nemaline Myopathy.

Marc is the CEO of Agile Physical Therapy, a company he founded in July of 2002. He is also the director of physical therapy for the Palo Alto Medical Foundation. Marc is on the advisory board for two medical device companies involving technological advances in treatment and rehabilitation of orthopedic and neurologic advances.

Marc is a Board-certified Orthopedic Specialist. His affiliations include: American Physical Therapy Association, National Athletic Training Association, and Orthopedic and Sports Sections of the American Physical Therapy Association. He graduated from Columbia University, New York 1991.

Willie Quinn
Director, R&D Committee Chair

Willie Quinn is a life sciences entrepreneur with a passion for making a difference. Willie is CEO and co-founder of Bullet Biotechnology, a company developing a therapeutic vaccine for B-cell lymphomas based on technology invented at Stanford University. Prior to Bullet Biotech, Willie ran Corporate Development for Jazz Pharmaceuticals, a public specialty pharmaceutical company with experience developing and commercializing drugs for orphan indications (indications with fewer than 200,000 patients in the U.S.). Willie joined Jazz Pharmaceuticals in 2003 and actively participated in the creation of their first business plan, working in various functions such as business development, strategy, and finance over his 8 years at the company. Prior to Jazz Pharmaceuticals, Willie was COO and CFO at Novation Biosciences, a venture-backed startup developing software to extract meaningful information from microarray data.

Willie has an MBA from the Stanford Graduate School of Business and an MA and a BA from Stanford University.

Cliff Katz
Director

Cliff lives in New York City with his wife, Alice, and son, Jackson (Jack). Jack was diagnosed with Nemaline Myopathy in 2011 at 15 months old. Cliff joined the team of a Foundation Building Strength because of their mutual dedication to finding a cure or treatment for people with Nemaline Myopathy.

Cliff is an attorney with the national law firm of Kelley Drye & Warren LLP. He focuses his practice on complex litigation matters, with an emphasis on cases concerning fraud, deception, and false claims in the health care sector. He received his J.D. degree from the University of Pennsylvania Law School, and a B.A., summa cum laude, from Rutgers University.

Patricia Mitchell
Director

Patricia Mitchell’s daughter Kathryn (Katie) Mitchell was diagnosed with Nemaline Myopathy in 2008, at the age of 2. Patricia has her Master’s degree in business from Michigan State University. She currently works for the global health care company Baxter International, as a consultant to sales teams in the areas of finance, sales force effectiveness and commission plan design.

Prior to working for Baxter, Patricia spent 9 years working in consulting. Prior to that, while earning her degrees, she played and coached Division 1 Collegiate volleyball. Patty believes her background in athletics/training, problem solving and now health care have ideally prepared her for work on the board of A Foundation Building Strength. In her spare time Patty teaches religious education to children through St. Joseph’s parish in Libertyville, Illinois, where she currently lives with her family.

Jay Kershner
Director

Jay strives to make a difference by fundraising for causes he believes in. He  began raising money for AFBS in 2008 at the 1st annual fitness challenge and has been a lead fundraiser every year since.

Prior to joining AFBS, Jay spent 15 years in the restaurant industry, managing restaurants in San Francisco and the Peninsula.  In 2000 he transitioned to customer service industry, and held Director roles at TiVo, Dash Navigation and Zynga.  Jay is currently the Senior Director of Customer Service at Fitbit Inc.   Jay holds a Bachelor of Science degree from the University of Massachusetts, Amherst.

Sharon Fiedler Shimanovsky, J.D.
Director

Sharon Fiedler-Shimanovsky held her first fundraiser for AFBS in 2013, a few months after her 7 month old daughter, Liv, was diagnosed with Nemaline Myopathy.  She has raised over $300,000 for NM research and is determined to raise more until there is treatment that truly betters the lives of those living with the disease.    When Sharon was pregnant with her second son, she was diagnosed with stage III breast cancer, which she beat.  Nemaline Myopathy is next.

Prior to becoming a mother, Sharon practiced law at Greenberg Glusker, LLP and subsequently joined her family’s real estate business.  She was named one of Los Angeles Magazine’s “super agents”  her first year.  She earned a B.A. from U.C.L.A. with departmental highest honors and a J.D. from U.C. Davis where she was a law review editor.  Her law review article was selected for publication in 1999.  She lives in Los Angeles with her husband and three children.

Boris Shimanovsky
Director, Science Advisor

Boris’ daughter, Liv has NM and he plans to change that.  Boris has been an executive at multiple startups and currently works as VP of Engineering at Factual, an LA-based location data startup, where he manages a team of approximately 50 engineers.

Boris holds a BS in Physiological Science and an MS in Computer Science, both from UCLA, where he published a paper on hiding data in DNA and also won an award for research involving heart attacks and chaos theory.  He put himself through school working night shifts as an ambulance driver. Boris lives in Los Angeles with his badass wife and three amazing children. He is a lousy philosopher, a mediocre poet, and will someday become a great chef.

John W. Day, M.D., Ph.D.
Medical Director

Dr. Day has over 25 years of experience in diagnosing, treating, and supporting patients with neuromuscular diseases.  He is involved in ongoing research defining causes, diagnosis and novel treatments of genetic neuromuscular disorders. Prior to his arrival at Stanford in 2011, Dr. Day directed the Paul and Sheila Wellstone Muscular Dystrophy Center at University of Minnesota.  Dr. Day graduated from the Albert Einstein College of Medicine and completed his Residency and Fellowship at University of California Medical School in San Francisco.  Dr. Day is Board Certified in Neurology by the American Board of Psychiatry and Neurology.

Dr. Day serves as an advisor to many scientific committees researching neuromuscular diseases, including NIH’s Advisory Committees on Muscular Dystrophy and Muscular Dystrophy research.  His areas of interest include most areas of nerve and muscle diseases, in particular, muscular dystrophies, motor neuron diseases, Ataxia and Myasthenia Gravis.

Alan Beggs, Ph.D.

Alan Beggs is Associate Professor of Pediatrics at Harvard Medical School and a Research Associate at the Department of Medicine, Division of Genetics, Children’s Hospital in Boston, MA.

Dr. Beggs’ research is aimed at understanding the structures and function of the proteins that make up skeletal muscle fibers. Beggs and colleagues are taking two approaches to the problem. The first involves identifying and characterizing new skeletal muscle genes and proteins. The second entails identifying genetic mutations that cause human neuromuscular disease. These simultaneous approaches should enable them to correlate their basic muscle biology findings with their studies on muscle tissue in patients with neuromuscular diseases. The diseases under study include nemaline myopathy, myotubular myopathy, congenital fiber type disproportion (CFTC), multiminicore disease, and congenital myopathies with non-specific muscle findings.

Ching Wang, M.D., Ph.D.

Ching Wang is Associate Professor of Neurology at Stanford Medical School and Director of the Pediatric Neuromuscular clinic at Lucile Packard Children’s Hospital. Dr. Wang is currently conducting clinical trial with Spinal Muscle atrophy patients.

Helen Blau, Ph.D.

Helen Blau is the Donald E. and Delia B. Baxter Professor for Stem Cell Biology at the School of Medicine at Stanford University.

Dr. Blau is an elected member of the Institute of Medicine of the National Academy of Sciences, a member of the American Academy of Arts and Sciences, a fellow of the American Academy for the Advancement of Sciences and a recipient of numerous national and international awards. Her research expertise is in the area of nuclear reprogramming and stem cell biology, and she is renowned for her work on muscle stem cells and tissue regeneration in normal and dystrophic muscle of mice and humans.

Nanci Yuan, M.D.

Nancy Yuan is Associate Professor of Pediatric pulmonary medicine at Stanford University. Dr. Yuan’s research interests are concentrated on the pulmonary complications due to neuromuscular disease, cerebral palsy/hyper tonicity, scoliosis, and sleep disorders in the pediatric population.

Susan Iannaccone, M.D.

Susan T. Iannaccone, MD, FAAN, is the Jimmy Elizabeth Westcott Distinguished Chair in Pediatric Neurology, Professor of Neurology and Pediatrics at the University of Texas Southwestern Medical Center, and Director of Child Neurology at Children’s Medical Center Dallas.

Dr. Iannaccone was Principal Investigator for AmSMART, American Spinal Muscular Atrophy Randomized Trials, from 2000 to 2008, with funding from the National Institutes of Health. She has been site Principal Investigator for clinical trials in Duchenne muscular dystrophy and hereditary neuropathies. Her Neuromuscular Medicine clinic meets four times per week and serves a population of over 500 children with neuromuscular diseases. She is mentor for a pediatric NMM fellow each year and Director of the annual Carrell-Krusen Neuromuscular Symposium.

John R. Bach, M.D.

John R. Bach, M.D. has written 7 books and 450 articles and book chapters on managing people with neuromuscular insufficiency and failure and the extubating and decanulating of patients who are unable to breathe unaided.  Dr. Bach is a professor at the UMDNJ-New Jersey Medical School where he is currently:(a) Professor of Physical Medicine and Rehabilitation, including Research in Physical Medicine and Rehabilitation and Neuromuscular-Pulmonary Rehabilitation; (b) Vice Chairman of the Department of Physical Medicine and Rehabilitation; (c) Professor of Neurosciences in the Department of Neurosciences; (d) Director of Research and Associate Medical Director of the Department of Physical Medicine and Rehabilitation at University Hospital, Newark, N.J.; (e) Co-Director of the Medical School’s Jerry Lewis Muscular Dystrophy Association Clinic; and (f) Medical Director of the Center for Ventilator Management Alternatives at University Hospital, Newark, N.J.  He is also a fellow of the Association of Academic Physiatrists, the American College of Chest Physicians, and the American Academy of Physical Medicine and Rehabilitation.

David P. Roye, Jr., M.D.

Dr. Roye is the St. Giles Professor of Pediatric Orthopaedic Surgery at Columbia University, the Attending Orthopaedic Surgeon at NewYork-Presbyterian Hospital, the Director of Pediatric Orthopaedic Surgery at Morgan Stanley Children’s Hospital of NewYork-Presbyterian, the Executive Medical Director of the Columbia Cerebral Palsy Center, and the Medical Director of the Children of China Pediatrics Foundation.  He has earned numerous honors and awards, including:  the American Academy of Orthopaedic Surgeons Humanitarian Award, the Order of Merit award from the Orthopaedic Research and Education Foundation, ranking in America’s Top Doctors by Castle Connolly, and recognition by the Children’s Dream Foundation for his contributions to improving children’s healthcare.  He has authored hundreds of articles, written text books, served on editorial committees for prestigious medical journals and has lectured throughout the world.  Dr. Roye also founded International Healthcare Leadership, a non-profit organization which designs and implements educational programs in health care management and policy in emerging nations.

Marc Guillet
Executive Director / President

Marc started A Foundation Building Strength in February of 2008 to help his daughter Ava and all patients with Nemaline Myopathy.

Marc is the CEO of Agile Physical Therapy, a company he founded in July of 2002. He is also the director of physical therapy for the Palo Alto Medical Foundation. Marc is on the advisory board for two medical device companies involving technological advances in treatment and rehabilitation of orthopedic and neurologic advances.

Marc is a Board-certified Orthopedic Specialist. His affiliations include: American Physical Therapy Association, National Athletic Training Association, and Orthopedic and Sports Sections of the American Physical Therapy Association. He graduated from Columbia University, New York 1991.

Thomas Unger, PhD
Advisor

Experienced executive working with scientific and private equity firms seeking to invest in, and support the growth of, Life Science companies.

Specialties: Experienced in strategic planning, partnership formation, mergers and acquisitions, product launch and, program and portfolio management for pharmaceutical, biotechnology and medical device companies. Conducted technical and market assessments for life-cycle management of key franchise brands, developed corporate and therapeutic area strategy, and supported commercialization efforts. Developed a 2nd generation micro-array testing platform for discovery and diagnostic applications.

Elyse Stratton
Advisor

Elyse has worked on the clinical and commercial development of companion diagnostic tests from the pharmaceutical, laboratory and patient perspective. She joined Genentech in their diagnostic operations group and was responsible for running an advisory board on EGFR testing methodologies; she worked at Monogram Biosciences on the global launch of an HIV companion diagnostic for Pfizer.  Elyse has experience in market analytics and planning, commercial operations and diagnostic strategy. She currently consults on strategic and commercial issues for large and small biotech companies, as well as the VC community. She earned her MA in International Relations and Economics from Johns Hopkins University and her MPhil in Bioscience Enterprise from University of Cambridge.

KT Moortgat, PhD
Advisor

KT Moortgat is an enabler of technology translation and commercialization, through startup incubation, investment decision making, and corporate partnering and licensing.  For several years, she has worked as an executive-level consultant leading business development, strategy, and licensing for life science companies in precision medicine, and microbiome and oncology therapeutics. Prior, she was a partner at the venture capital firm Mohr Davidow Ventures (MDV) where she was responsible for sourcing and evaluating investments in life science and energy companies, and supported personalized medicine portfolio companies with product strategy and corporate development.  She led university partnering and engaged key opinion leaders and technology innovators through the MDV Innovators Award.

Dr. Moortgat is the founder and former director of the hub of entrepreneurship at the University of California San Francisco and the QB3 Institute, which established a university-based core of resources and services for entrepreneurs in addition to mentoring, training and networking with investors and industry leaders. She holds doctoral and Master’s degrees from University of California San Diego, and an undergraduate physics degree from UC Berkeley.

Thomas Hyde, MD PhD
Advisor

Thomas M. Hyde, M.D., Ph.D., is the Chief Operating Officer of the Lieber Institute for Brain Development. As such, he directly oversees all functions of the Central Administrative Division, including personnel, finance, information technology, facilities, contracts, and affiliations with outside organizations. In addition to his administrative portfolio, Dr. Hyde manages the Institute’s collection of postmortem human brain samples.  His research focuses on changes in GABA signaling across the stages of normal development and in major psychiatric diseases. Dr. Hyde attended the University of Pennsylvania from 1974–1984. He received a B.A. in Biology in 1978, graduating summa cum laude. He received a joint M.D.-Ph.D. in 1984, with a Ph.D. from the Department of Anatomy. While in this combined degree program, he was the recipient of a University Scholars Award from Penn, and a Medical Scientist Training Program Scholarship from the NIH. He served a general medical internship at the Penn Presbyterian Medical Center from 1984–1985, followed by a neurology residency at Stanford University from 1985–1988. He served as Chief Resident in Neurology the final year of his residency. After leaving California, Dr. Hyde worked in the Clinical Brain Disorders Branch (CBDB) of the intramural program of the National Institute of Mental Health (NIMH). He ran the Neurology Consultation Clinics at St. Elizabeth’s Hospital under the auspices of the NIMH from 1988–1996. From 1996–2010, he worked full-time in the Section on Neuropathology in the CBDB, developing the world’s largest collection of postmortem human brains dedicated to neuropsychiatric disease in general, and schizophrenia in particular.

Mark Eller, PhD
Advisor

Mark G. Eller, Ph.D., is a drug development executive with twenty + years experience in pharmaceutical R&D; including leadership of other VP’s and organizations/departments of 50+ employees. Dr. Eller has extensive experience in pre-clinical studies and the design, execution, analysis and reporting of Phase 1, 2 and 3 clinical trials in the U.S. and Europe. His experience also includes preparation of multiple regulatory filings in U.S., Canada and Europe including IND, MAA, NDA, and CTD submissions leading to approvals. Mark has participated in 6 FDA Advisory Committee meetings, twice as a primary presenter. He is co-inventor on 4 patents in drug discovery and development.

Willie Quinn
Director, R&D Committee Chair

Willie Quinn is a life sciences entrepreneur with a passion for making a difference. Willie is CEO and co-founder of Bullet Biotechnology, a company developing a therapeutic vaccine for B-cell lymphomas based on technology invented at Stanford University. Prior to Bullet Biotech, Willie ran Corporate Development for Jazz Pharmaceuticals, a public specialty pharmaceutical company with experience developing and commercializing drugs for orphan indications (indications with fewer than 200,000 patients in the U.S.). Willie joined Jazz Pharmaceuticals in 2003 and actively participated in the creation of their first business plan, working in various functions such as business development, strategy, and finance over his 8 years at the company. Prior to Jazz Pharmaceuticals, Willie was COO and CFO at Novation Biosciences, a venture-backed startup developing software to extract meaningful information from microarray data.

Willie has an MBA from the Stanford Graduate School of Business and an MA and a BA from Stanford University.

Boris Shimanovsky
Director, Science Advisor

Boris’ daughter, Liv has NM and he plans to change that.  Boris has been an executive at multiple startups and currently works as VP of Engineering at Factual, an LA-based location data startup, where he manages a team of approximately 50 engineers.

Boris holds a BS in Physiological Science and an MS in Computer Science, both from UCLA, where he published a paper on hiding data in DNA and also won an award for research involving heart attacks and chaos theory.  He put himself through school working night shifts as an ambulance driver. Boris lives in Los Angeles with his badass wife and three amazing children. He is a lousy philosopher, a mediocre poet, and will someday become a great chef.

Dana Guillett

Dana graduated from University of Southern California with a B.S. in Business Administration. She thrived as a recruiter in the area of Human Resources for a variety of companies in the fields of Entertainment, Investment Banking and Technology. In 2002, Dana partnered with her husband in starting Agile PT. When her youngest child of three was born with NM, Dana founded A Foundation Building Strength and invests her time in working to better the lives of those affected by this rare disease.

Aletha Coleman, J.D.

For the last 20 years, Aletha Leong Coleman has focused on serving non-profit organizations in the Palo Alto, CA area in various board capacities, including establishing board governance, chairing finance, audit, development committees, and chairing specific development efforts.  Aletha was born and raised in Honolulu, Hawaii, graduating from the University of Hawaii in 1978 with a BA (with Honors) in Medieval Studies. She also attended Hastings College of the Law at U.C. Berkeley, and is a (retired) attorney and CPA.

Annette Bialson, J.D.

Annette is a lawyer with extensive experience with non-profit foundations. She is currently Chair of the Board of Directors for Avenidas and is on the finance committee of the Northern California Arthritis Foundation.  Annette has over 20 years of experience practicing law in Silicon Valley. She is one of the founders of Bialson, Bergen & Schwab – a law firm specializing in domestic and international commercial law transactions of publicly traded companies.Annette received her J.D. from Stanford University.

Hali Weiss, M.D.

Dr. Weiss uses her experience to help A Foundation Building Strength select research projects for funding, as well as provide ongoing medical guidance to the Foundation.  Hali is a Clinical Instructor and Staff Physician at Stanford Lucille Packard Children’s Hospital Department of Neonatology. She is also an attending physician in the High Risk Infant Follow-Up Clinic.

Following a General Pediatrics residency at the Mount Sinai Medical Center in New York, Dr. Weiss completed a fellowship in Neonatology at the Cardiovascular Research Institute at UCSF. As a fellow, she conducted several neonatal outcome studies and her clinical experience in developmental follow-up clinics dates back to her residency. Dr. Weiss worked for several years as a clinical neonatologist at LPCH, Santa Clara Valley Medical Center, and El Camino Hospital before joining the high risk infant follow-up team at LPCH in 2003.

Heather Kun, M.S., Sc.D.

Principal and founder of HK Impact Advisors, partners with philanthropic, non-profit and corporate clients to offer customized services to build strategy with maximum potential for impact. Prior to founding her own consulting firm, Dr.Kun was Vice President of Research and Evaluation at the National Health Foundation (NHF) for over 6 years. She was responsible for overseeing the research and evaluation arm of the organization in addition to participating in development,operational and fundraising activities.

Prior to working for NHF, Dr. Kun was an epidemic intelligence service officer at the Centers for Disease Control and Prevention stationed in the Los Angeles County Department of Public Health’s Acute Communicable Disease Control Branch. She has also worked as a consultant for various private family foundations and has led and participated in multiple large scale quantitative and qualitative research projects specifically centered on immigrant health. Dr. Kun received her Doctorate of Science (Sc.D) degree from the Harvard School of Public Health and also holds an M.S. degree in Environmental Science and Management from the University of California, Santa Barbara and a B.A. in Biology and Environmental Sciences from Yale University.

Amy Herzog

Amy Herzog lives in Brooklyn with husband, Sam, and their daughter Frances. Franny was diagnosed with Cap Disesase, a rare variant of Nemaline Myopathy, a few months after she was born in 2012. Amy graduated from Yale College and the Yale School of Drama and is now a screenwriter and playwright. Amy is honored to join the AFBS Advisory Board and work towards finding a treatment for those with Nemaline Myopathy.

Don Kennedy, Ph.D.

Don Kennedy’s long and distinguished career has spanned education, science, the environment, and human health. Don is the President Emeritus and Bing Professor of Environmental Science and Policy, Emeritus at Stanford University. He is also a Senior Fellow by courtesy at the Wood Institute for the Environment, and the Editor-in-Chief Emeritus of Science Magazine (2000-2008).  Don has been on the faculty at Stanford University from 1960 to the present. He was Chair of the Department of Biology from 1964-1972, Director of the Program in Human Biology from 1973-1977, Provost from 1979 to 1980, and President of Stanford University from 1980 to 1992. Don was also Commissioner of the U.S. Food and Drug Administration from 1977-79 during the Carter Administration.

Don has been involved in various roles with a number of organizations over the years, including: National Commission for Public Service; Carnegie Commission on Science, Technology and Government; Director, Carnegie Endowment for International Peace; Trustee, the David and Lucille Packard Foundation; Senior Consultant, Office of Science and Technology Policy (Ford Presidency); Elected member, National Academy of Science, Institute of Medicine, American Academy of Arts and Sciences; American Philosophical Society Co-Chair, Committee on Science, Technology and Law (National Academy of Science); Editorial Board, New England Journal of Medicine; and Chairman, Selection Committee, National Academies Communications Awards.  Don holds AB and Ph.D. degrees in biology from Harvard.

Rob Reich, Ph.D.

Rob Reich got involved with A Foundation Building Strength through his passion for social entrepreneurship and philanthropy, and his desire to make a difference.

Rob Reich is Associate Professor of Political Science, Ethics in Society, and, by courtesy, Education, at Stanford University. He also holds appointments in the following programs: Ethics in Society, American Studies, Urban Studies, and the Center for Social Innovation in the School of Business, the Center for the Study of Philanthropy and Civil Society, the Haas Center for Public Service, and in the School of Education. He is the author of Bridging Liberalism and Multiculturalism in American Education (University of Chicago Press, 2002), co-author of Democracy at Risk: How Political Choices Undermine Citizen Participation and What We Can Do About It (Brookings Institution Press, 2005), and co-editor of Toward a Humanist Justice: The Political Philosophy of Susan Moller Okin (Oxford University Press, 2008).  Rob has received fellowships from the Spencer Foundation, the Stanford Humanities Center and the Center for Human Values at Princeton University.

Roger Kornberg, Ph.D.

Biochemist and professor of structural biology at Stanford University School of Medicine. Awarded the Nobel Prize in Chemistry in 2006 for his studies of the process by which genetic information from DNA is copied to RNA, “the molecular basis of eukaryotic transcription”.