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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. |
You can see which participants serve on which committees by the symbol(s) next to each
person's name:
*
denotes Board of Trustees
^
denotes
Scientific Advisory Committee
| Cambi, Dr. Franca (M.D., Ph.D.)^ |
| Garbern, Dr. Jim (M.D., Ph.D.)*^ |
| Gasperetti, Rob* |
| Hobson, Don (M.B.A.)* |
| Hobson, Dr. Grace (Ph.D.)^ |
| Kamholz, Dr. John (M.D., Ph.D.)^ |
| Leonard, Jeff* |
| Manley, Dave* |
| Marks, Dr. Harold (M.D.)^ |
| Naidu, Dr. SakkuBai (M.D.)^ |
| Sargent, Fran* |
| Skelly, Ed* |
| Spear, Laura* |
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 the 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.
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Dr. Jim Garbern is an Assistant Professor in Neurology at
Wayne State University in Detroit, MI. Dr. Garbern obtained his undergraduate in
Biochemistry from Rice University in Houston, TX and his Ph.D. and M.D. from the
Baylor College of Medicine also in Houston. Dr. Garbern’s post-graduate work
included an internship in Internal Medicine and residency in Neurology at the
University of Washington in Seattle as well as a fellowship in Molecular
Neuroscience at the National Institute of Health in Bethesda, MD. He also worked
as an Assistant Professor in the Department of Neurology and as an Associate
Member of the Institute of Neurological Sciences, both at the University of
Pennsylvania School of Medicine. Dr. Garbern also serves as a member of the
Scientific Advisory Board of the National Tuberous Sclerosis Association and as
Co-Director of the U. S. Pelizaeus-Merzbacher Consortium. Dr. Garbern has
published many papers and book chapters in the fields of neurogenetics and,
specifically, PMD, and remains one of the leading PMD researchers.
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Rob Gasperetti is 41 years old and lives in Franklin Square,
New York, which is located on Long Island. He has been married for 12 years to
Kristen, and has four sons. Brian (9) and Dylan (2) are affected with PMD and
Trevor (7) and Andrew (4) are not. They were not diagnosed until 2004, when the
same symptoms were noticed with both Brian and Dylan. Brian additionally was
born with a cleft palate, which proved to be a red herring, and possibly delayed
the proper diagnosis. Rob is currently a Detective with the New York Police
Department with 19 years on the force, and a student at Manhattan College.
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Don Hobson is the Board Chair and Treasurer of the PMD Foundation, as well as the husband of
Dr. Grace Hobson, a PMD researcher
at the duPont Hospital for Children. 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 a several non-profit organizations.
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Dr. Grace Hobson is Head of the Neurogenetics Research
Laboratory and Director of Diagnostics for PMD at the Alfred I. duPont
Hospital for Children in Wilmington, DE. She is also an Assistant 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, VA. She was a high school
and junior high school science/biology teacher before getting a Ph.D. from the
University of Delaware in Newark, DE and embarking on a career in research and
molecular diagnostics. Dr. Hobson's research is aimed at discovering molecular
mechanisms in PMD that will allow the development of rational treatments and
ultimately a cure. She has received a grant from the National Institutes of
Health 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 both the family
meeting in 2000 that launched the PMD Foundation and a symposium at the duPont
Hospital for families and researchers in 2003.
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Dr. John Kamholz is a member of 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
received his training at the University of Pennsylvania and at the National
Institute of Health.
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Jeff Leonard is Secretary of the Board and Webmaster of the PMD
Foundation, 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 over 10 years of
experience in technology and executive management. Prior to working for Bristol-Myers
Squibb, Jeff spent many 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.
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Dave Manley is the father of Jaden Manley who was born on
12/5/2001. Jaden, his first and only child, was diagnosed in September
2003 with PMD. This came as a complete shock as he and his wife, Julie, found
that she is a carrier for PMD. However, there was no history of the disease in
her family. There were not even any 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 this website, Dave made a commitment to do
what he could to help his son and others that are affected by PMD. He made a
career change in September 2004 that would enable him to be more involved in
Jaden's care as well as enable 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 looks forward to making a difference for his son and all
those touched by PMD.
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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. He is presently 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. Since 1987 he has given many scientific presentations and has
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 this
Foundation.
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Dr. SakkuBai Naidu is a research scientist at the Kennedy
Krieger Institute. She is 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.
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Fran Sargent is Recording Secretary for the PMD Foundation.
She is a retired CPA living in northern California with her husband Tim. She
is the greatest fan of her nephew Jeffrey, a young man diagnosed with PMD/SPG2
at age 13. During her 30 year career, Fran held positions in accounting
management with various public accounting and high technology firms in the
Silicon Valley. Most recently she served as VP Finance & Administration
for Level One Communications. She currently spends her time volunteering for
community non-profit organizations, and hopes her volunteer efforts with the
PMD Foundation will make a difference in the lives of children and families
affected by PMD.
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Ed Skelly lives in the Chicago suburbs with his wife
Jeanette. They have had 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. He and his family are regular attendees at
the family conferences in Indianapolis
each year.
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Laura Spear is a registered nurse with a degree from LaSalle
University who is also a parent and sibling of a PMD affected child. She has
worked at the Voorhees Pediatric facility as a staff nurse and a relief charge
nurse. Laura was largely responsible for organizing the first PMD Consortium
meeting in October of 1997. Prior to her nursing career, Laura worked as a
Procurement Analyst with the Naval Ship Systems Engineering Station and as a
Procurement Clerk with the Naval Regional Contracting Center, both at the
Philadelphia Naval Shipyard. She also worked as a staff secretary at the Federal
Bureau of Investigation in Philadelphia and as a professional model.
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