This page contains biographies for all trustees and committee participants of The PMD Foundation.
- The Board of Trustees provides direction for major areas such as strategic planning, personnel, finance, trustee development and nominations.
- The Scientific Advisory Committee represents progressive thinking in the fields of biomedical research, genetics, PMD and leukodystrophies.
Board of Trustees Members
Tina (Garbern) Case
Patti Daviau
Rob Gasperetti (Treasurer)*
Don Hobson (Chairman)*
Gina Jones
Jeff Leonard (Secretary)*
Dave Manley*
Ed Skelly
Laura Spear
* denotes Executive Committee member
Support Staff
Kathy Kanous ~ Media
Tara Veal ~ Accounting
Scientific Advisory Committee
Dr. Robert Akins (Ph.D.)
Dr. Franca Cambi (M.D./Ph.D.)
Dr. Grace Hobson (Ph.D.)
Dr. John Kamholz (M.D./Ph.D.)
Dr. Harold Marks(M.D.)
Dr. SakkuBai Naidu (M.D.)
Biographies (in alphabetical order)
Dr. Robert Akins
Dr. Robert Akins is Co-Director of the Center for Pediatric Clinical Research and Development at Nemours, one of the nation’s leading pediatric health systems. Dr. Akins received his B.A. in Biochemistry and his Ph.D. in Cell and Molecular Biology from the University of Pennsylvania. His postdoctoral work was conducted at Thomas Jefferson University in Philadelphia and the Nemours – Alfred I. duPont Hospital for Children in Wilmington, DE. He joined the Nemours faculty at duPont Hospital in 1995 and currently heads the Tissue Engineering and Regenerative Medicine Research program there. He is also an adjunct Professor in Materials Science and Engineering at the University of Delaware in Newark, DE, and an inaugural fellow of the American Heart Association’s Council on Cardio Thoracic and Vascular Surgery. Dr. Akins’ research focuses on advanced therapies to treat acquired and congenital diseases affecting skeletal, cardiac, and smooth muscle. He has a particular interest in biomaterial and cell therapeutic approaches for functional regeneration of contractile function. Current projects address diseases that profoundly impact pediatric health and include investigating regenerative strategies to improve skeletal muscle innervation and movement in children with neuromotor disabilities.
Dr. Franca Cambi
Dr. Franca Cambi is a PMD Foundation incorporating Board member. Dr. Cambi holds an M.D. degree from the University of Florence and a Ph.D. degree in Neuroscience from the University of Rome. Shortly after completing her Ph.D., Dr. Cambi trained in Neurology at Thomas Jefferson University where she was on staff from 1992 to 2003. She joined the Departments of Neurology, Neurobiology and Anatomy at the University of Kentucky in 2004 as Associate Professor. She is also on the Faculty of the Spinal Cord and Brain Injury Center at the University of Kentucky. Her clinical expertise is in the diagnosis and management of neurogenetic disorders and she has established a neurogenetics clinic at the U. of Kentucky. Dr. Cambi has published in the fields of PMD, spastic paraparesis and myelin and has significant clinical and research experience with disorders of myelin. Dr. Cambi is involved in collaborative studies aimed at elucidating the causes, pathogenesis and treatment of X-linked disorders of myelin. In addition, her basic research program is aimed at investigating the regulation of oligodendrocyte (the cells that make myelin in the central nervous system) differentiation. Dr. Cambi has participated in several PMD meetings with families of patients affected by PMD and has been an advocate for patients with PMD.
Tina (Garbern) Case
Tina is the sister of Dr. Jim Garbern, who passed away in 2011 after many years of committed involvement in the PMD Foundation. She joined the PMD Foundation in his honor to carry on his vocation. Tina lives in Saratoga, CA with her husband, Doug, and her daughters, Danielle, Alli and Sami. Tina acquired her B.S. in Computer Science from the University of Maryland. She was employed for a number of years as a Strategic Business Manager by Hewlett Packard. Tina is currently a self-employed photographer (Tina Case Photography) with a growing cliental. She was actively involved in creating the new PMDF website.
Patti Daviau
Patti, otherwise known as “Mama Bear” to her extended PMD family, lives in Indianapolis with her husband George where she is a registration specialist at IU Hospital. PMD has affected Patti’s extended family dating back at least 100 years and claimed the lives of Patti’s own three sons, George, Brantley and Adam. In 1989, Patti started a PMD newsletter and then in 1990, hosted the first annual PMD Family Get-Together at Riley Hospital for Children in Indianapolis. This event has become an annual tradition, providing support to many PMD patients/families. Patti is also one of the first lines of contact for families with recent PMD diagnoses. She spends many hours on the phone sharing her knowledge of the disease with those who want/need to know more. Patti hosts a group on Facebook that provides PMD families around the world with a venue to share experiences and ask questions of their peers. Patti was a 2010 recipient of a nationally recognized “Jefferson Awards for Public Service” and a “2009 Community Service Award” in Indianapolis.
Rob Gasperetti
Rob Gasperetti lives in Franklin Square, New York, which is located on Long Island. He is married to Kristen, and has four sons. Brian (the oldest) and Dylan (the youngest) are affected with PMD, while his middle sons Trevor and Andrew are not. Brian and Dylan were not diagnosed until 2004, when the same symptoms were noticed in both boys. Brian additionally was born with a cleft palate, which proved to be a red herring, and possibly delayed the proper diagnosis. Rob is currently the Human Resources Manager at Piping Rock Club and was formerly a detective with the New York City Police Force for 21 years.
Don Hobson
Don Hobson is the Board Chair of the PMD Foundation, as well as the husband of Dr. Grace Hobson, a PMD researcher at the duPont Hospital for Children and member of the Scientific Advisory Committee. Don received a BS in Mechanical Engineering from The University of Virginia and an MBA from the Darden Business School, also at The University of Virginia. He has over 40 years experience in the use of Computer Technology for business management in Finance, Manufacturing, Research, Development, Marketing and Sales. Don has 27 years experience working with corporate information and databases for ICI Americas, and has spent the last ten years in similar roles with the Zeneca Pharmaceuticals business. He also has 15 years experience as a non-profit board member and community volunteer and has been Officer and Treasurer of several non-profit organizations. Don spends many hours as the “PMD Ambassador” at numerous convention and research venues.
Dr. Grace Hobson
Dr. Grace Hobson is Senior Research Scientist, Head of the Neurogenetics Research Laboratory and Director of Diagnostics for Leukodystrophies at the Alfred I. duPont Hospital for Children in Wilmington, DE. She is also an Associate Professor of Pediatrics at Thomas Jefferson University in Philadelphia, PA. She obtained a B.S. in biology from Mary Washington College in Fredericksburg, VA and a M.Ed. from the University of Virginia in Charlottesville. She was a high school and junior high school science/biology teacher before getting a Ph.D. from the University of Delaware in Newark and embarking on a career in research and molecular diagnostics. Dr. Hobson’s research is aimed at understanding molecular mechanisms in PMD that will allow the development of rational treatments and ultimately a cure. She has received grants from the National Institutes of Health, the PMD Foundation, the Kylan Hunter Foundation, and the Carson Scott Suter Foundation to fund this work. Dr. Hobson’s contact with families, genetic counselors and physicians through her molecular diagnostics work has allowed her to refer families to the PMD Foundation for information and support. Dr. Hobson has participated in meetings, symposia, workshops and family conferences on PMD. In addition, she helped to organize the family meeting in 2000 that launched the PMD Foundation and she hosted symposia for families and researchers at the Alfred I. duPont Hospital for Children in 2003 and 2009.
Gina Speller Jones
Gina lives in Chicago and is the mother of two sons with Classic PMD, Garrett and Gavin. She is married to Gordon Jones, a Chicago fire-fighter. Gina studied at Tennessee State University and is a registered nurse. She is currently the Family Member Coordinator for the LEND program (Leadership Education in Neurodevelopmental and related Diseases) at the University of Illinois, Chicago. Gina is the creator and Chair of the Jones PMD Walk ‘n Roll (formally the Jones Family Walk ‘n Roll for PMD), an annual fundraiser initiated in 2008. She is very involved in fundraising and family support for the PMD Foundation.
Dr. John Kamholz
Dr. John Kamholz is currently a Professor of Neurology and a Professor in the Center for Molecular Medicine and Genetics at Wayne State University in Detroit, MI. His clinical/research interests include: MS; genetic aspects of neurologic disorders; genetic and molecular biologic aspects of central and peripheral myelin disorders. He has received research funding from the National Institute of Health (NIH), the National MS Society and the Muscular Dystrophy Association. Dr. Kamholz completed his B.A., M.D. and Ph.D at the University of Pennsylvania and completed his training at the National Institute of Health.
Kathy Kanous
Kathy has two nephews affected by classic PMD, Bradley and Ben. Bradley passed away in 2009 when he was 11 years old. Ben was born in 1990. Like her two sisters, Kathy is a carrier. Her son is PMD free, but her daughter has been diagnosed as a carrier, so she is committed to doing what she can to help eradicate the disease. Kathy graduated with a B.S in biology and an M.S.A. in administration from Central Michigan University. She has worked as a Medical Technologist, a Research Technician, an IT Director, a Customer Service Director and has experience in marketing and web design. Kathy has spearheaded projects to create updated media (brochures, emails and websites) to increase awareness of Pelizaeus Merzbacher Disease.
Jeff Leonard
Jeff Leonard is Secretary of the Board and Associate Director of Project Management for Bristol-Myers Squibb Company. He is the father and uncle of two PMD-affected children. Jeff received a B.A. in English and a B.A. in Political Science from Rutgers University, and a programming degree from Chubb Advanced Institute. He has many years of experience in technology and executive management. Prior to working for Bristol-Myers Squibb, Jeff spent a number of years working on Wall Street in lower Manhattan for J.P. Morgan & Co. investment bank and for Andersen Consulting. He prides himself on understanding the most technical details of PMD (without any formal medical training), and is eager to make a difference in the lives of all PMD-affected individuals. He loves hearing from new families and spends many hours on the phone providing information and support.
Dave Manley
Dave Manley lives in Mexico, NY with his wife, Julie, and son, Jaden. Jaden, his first and only child, was born on December 5, 2001 and diagnosed with PMD in September 2003. This came as a complete shock when his wife, Julie, found that she is a carrier for PMD. There was no history of the disease in her family, not even relatives that could have had PMD and been misdiagnosed. After learning of Jaden’s condition and gaining knowledge of PMD (mostly from the information found on the PMD Foundation website), Dave made a commitment to do what he could to help his son and others that are affected by PMD. Dave had a B.A. in History from the State University of New York and was a Manufacturing Sales Rep for an engineering company. He made a career change in September 2004 to enable him to be more involved in Jaden’s care as well as allowing him to get involved with the PMD Foundation. Dave is committed to working with all those in the PMD Community to raise money for research, family support and education. His philosophy is, “if I don’t do something, who will?” He is dedicated to making a difference for his son and all those touched by PMD.
Dr. Harold Marks
Dr. Harold Marks graduated from the University of Michigan Medical School. He did his Pediatric and Neurology training at the University of Michigan Medical Center and Temple University Medical Center in Philadelphia, PA. He was also a Clinical Professor of Pediatrics at the University of South Florida. Since 1985, he has been involved in the care of children with PMD and X-linked spastic paraplegia. He has given many scientific presentations and written several articles on these subjects. In 1997, he hosted the first PMD Consortium meetings, which were the very first step towards the creation of the PMD Foundation. Dr. Marks is currently a pediatric neurologist at St. Christopher’s Hospital for Children in Philadelphia, PA.
Dr. SakkuBai Naidu
Dr. SakkuBai Naidu is a research scientist at the Kennedy Krieger Institute. She is also a Professor in the Departments of Neurology and Pediatrics at the Johns Hopkins University School of Medicine. Dr. Naidu received her undergraduate and medical training at Madras Medical College in India. She trained in Pediatric Neurology at Albert Einstein College of Medicine in New York and worked there as well as in Chicago at the University of Illinois and Loyola University in Maywood, IL. She came to Hopkins in 1984 as a Joseph P. Kennedy Jr. Foundation Scholar. Dr. Naidu directs KKI’s Neurogenetics Unit where she conducts research in Leukoencephalopathies and Rett Syndrome. Dr. Naidu is a member of the American Academy of Neurology, Child Neurology Society, American Neurological Association, International Child Neurology Society, United Leukodystrophy Foundation, Society for Inherited Metabolic Disorders, Society for Neuroscience, Neurological Society of India, and the American Association for the Advancement of Science.
Ed Skelly
Ed Skelly lives in the Chicago suburbs with his wife Jeanette. They have two children, Jacqui and Ed. Their son Ed had PMD and passed away in March of 2007 just before his 14th birthday, but not before living a full, and inspiring life. The Skellys are regular attendees at the Riley PMD Family Conferences in Indianapolis each year. providing support to those who attend. They are also very involved in helping organize the Jones PMD Walk ‘n Roll held in Chicago each September, as well as raising money as “Team Eddy”.
Laura Spear
Laura Spear attended LaSalle University and received her nursing degree from Gloucester County College. She had both a son (Jared Michael Spear – 1/27/91-8/26/10) and a brother (John Michael Laprocido ~ 6/20/66 – 8/16/80) affected by classic PMD. She lives in Marlton, NJ with her husband, Rand, and son, Michael. She has worked at the Voorhees Pediatric facility as a staff nurse and a relief charge nurse. Laura currently works as a volunteer at Archway School (Jared’s old classroom) and at the Jewish Community Center. For over 20 years, she has been a tireless advocate for the fight against PMD. Laura was largely responsible for organizing the first PMD Consortium meeting in October of 1997 and was Chairwoman of past PMD Golf Outings. Laura authored articles in Advance for Nurses and Exceptional Parent magazines and was featured with Jared in SJ Magazine. Even though Jared is gone, he still guides Laura’s work as an advocate for those affected by PMD as well as those with other special needs.
Tara Veal
Tara lives in Santa Rosa, CA with her husband Matt, and her daughters Natalie and Maya. Tara is also the mother of a PMD affected son, Clayton, who passed away in June 2007 at 2 1/2 years old. Tara studied accounting at Sonoma State University and is currently a self-employed accountant. She manages accounting functions (as well as a variety of other tasks) for the PMD Foundation and was instrumental in the “Brass in the Grass” (vintage automobile show) fundraisers.