ISMRD is an all-volunteer organization led by a Board of Directors whose backgrounds span nations, diseases and experience. Each member of the Board serves a two-year term, which can be renewed upon the approval of the remaining members. Terms end in March of each year. Our Bylaws allow for a maximum of fifteen Board members, of which approximately 60% should consist of parents or relatives of a person with a Glycoprotein Storage Disease. We actively seek out others whose experience and background enhance our ability to carry out our Mission, and whose passion for that Mission enables us to reach our goals.
The current members of ISMRD Board of Directors are as follows:
President
Paul Murphy
United States
Profile: Mr. Murphy is founder of ISMRD and the parent of a
daughter, Taryn,
affected by Alpha-Mannosidosis. He has been an active player in the genetic
disease community since his daughter’s diagnosis in late 1994.
Mr. Murphy was the original designer of the website for ISMRD, as well as those for the National Tay-Sachs & Allied Diseases Association and the National MPS Society. He also created one of the first Internet resources for genetic diseases, Rare Genetic Diseases In Children: An Internet Resource Gateway (sponsored and hosted by NYU Medical Center).
Mr. Murphy was a member of the Board of Directors of the Genetic Alliance in Washington, D.C. from 2000-2004. The Genetic Alliance is an international coalition of lay support groups, medical professionals and corporations partnering to affect awareness of all genetic diseases. Mr. Murphy resides in Baltimore, Maryland.
Treasurer
Terri Klein
United
States
Profile: Terri Klein has a long career as a successful Real
Estate Broker in the Ann Arbor, Michigan Area. She graduated with a BS degree
from Madonna University in Human Resource Management and Business. Terri’s
Family includes her husband Walt and 4 children: Lisa, Dan, Vince and Jennifer.
All of her children are healthy with the exception of Jennifer, her youngest,
who has Mucolipidosis Type III (Pseudo-Hurler Poldystrophy).
Working with families and people relocating around the nation and the world has made made her career fulfilling. Her 18 years of experience in human resources for a global Industrial Engineering Company, as a Real Estate Broker and her background in local fundraising events are assets she utilizes to achieve common ISMRD goals. Working with families has always been a fulfilling element to her career, which she hopes to carry over into Family Outreach programs for ISMRD. She is currently a member of her company’s Charitable Foundation Service Group, is a Girl Scout Leader and a member of the National MPS Society in the United States.
Secretary
Mark Stark
United States
Profile: Mark Stark is the Managing Director for Business for
the Transistor Systems Group (T.S.G.) of
Applied Materials,
Inc. T.S.G. is a business group in Applied Materials, the largest supplier
of semiconductor manufacturing equipment to the semiconductor industry.
Mark is also the father of five children. The youngest, Robert, has Alpha-Mannosidosis, and has received two bone marrow transplants. The most recent was in April of 2002 and is, to date, successfully engrafted. Mark's experience with non-profit organizations comes mostly from his wife, Kathleen King. She is Chairman of the Silicon Valley Children's Hospital Foundation and a board member of Parents Helping Parents, a group dedicated to helping special-needs children. Kathleen is also a City Council member for Saratoga, California.
Asia-Pacific
Coordinator
John Forman
New Zealand
Profile: Mr. Forman, who is a native of New Zealand, is the
father of two adult twins,
Timothy and
Hollie, with Alpha-Mannosidosis and serves as the coordinator for
Australasian activities for ISMRD. He also co-chairs ISMRD's Planning and
Finance Committee.
John had an early career as a union organizer and disability services provider, and lately has built his career around the promotion of better treatment and more research on health issues, and the promotion of human rights, for those with rare disorders and disability.
John's interests include active participation in numerous nonprofit organizations, such as Lysosomal Diseases New Zealand (which he founded with his wife, Judith), the New Zealand Organization for Rare Disorders (for which he is Executive Director), Personal Advocacy Trust, and IHC Advocacy. John was one of two recipients of the Genetic Alliance's "Art of Advocacy" award for 2001. He shared the award with Augusto Odone of The Myelin Project.
Elizabeth
Cunha
United States
Profile: Ms. Cunha, the mother of Kevin, a child with
Fucosidosis, has over 10 years of professional experience in the health care and
customer service fields with
St. Francis Hospital
in Hartford, Connecticut. Elizabeth has worked extensively in local fundraising
efforts and activities related to the well being of her own children and
children in her community. She is also a member of the
National MPS Society in
the United States.
Elizabeth is currently undergoing studies to become a full-time Registered Nurse.
Debora
Murphy
United States
Profile: Ms. Murphy, the mother of
Taryn, who is affected
by Alpha-Mannosidosis, is a founding member of ISMRD, and served as Vice
President from 1999-2000 and Secretary from 2001-2004.
Debora resides in Baltimore, Maryland and is a certified professional Massage Therapist.
Jenny
Noble
New Zealand
Profile: Mrs. Jenny Noble is the parent of two young adults
with Mucolipidosis Type III (Pseudo-Hurler Polydystrophy).
Jenny has spent many years attending International MPS conferences in her search for information and symptomatic treatment for ML III. This led to her becoming a member of the Board of Directors for the Australian MPS Society, and she has worked closely with the society in strengthening links between her native New Zealand and Australia.
Jenny is currently a Trustee and Secretary for Lysosomal Diseases New Zealand. Though not trained in health or science, she is one of the co authors of The Osteodystrophy of Mucolipidosis Type III and the Effects of Intravenous Pamidronate Treatment published in the Journal of Inherited Metabolic Diseases.
Gretchen
Oswald
United States
Profile: Ms. Oswald is a board-certified genetic counselor
currently working in the
Institute of Genetic Medicine at Johns Hopkins University in Baltimore,
Maryland. She works in a very busy genetics clinic that sees a variety of adult
and pediatric patients with genetic conditions, including metabolic disorders,
skeletal dysplasias, and connective tissue disorders. The genetics clinic is
striving to increase education within the hospital and to the community about
diagnosis and management of genetic conditions as well as become more actively
involved in the treatment of Lysosomal Storage Diseases.
Gretchen is originally from Minnesota and she graduated with an undergraduate degree in biology and psychology from the University of Minnesota. She received her MS in genetic counseling from the Medical College of Virginia-Virginia Commonwealth University where her thesis interest was cystic fibrosis carrier screening.
Bill
Simpson
Canada
Profile: Bill is the father of a young boy with Mucolipidosis
Type III, Pseudo-Hurler Polydystrophy, and resides in Ontario, Canada. Bill
joined the Board of Directors of ISMRD in April 2004 and co-chairs ISMRD's
Finance Action Team with Roger Barilani. He is a graduate of York University in
Toronto, Canada, with a Bachelor of Arts Degree in Political Science. Bill
brings to the Board, a vast array of experience with non-profit organizations.
In his spare time, he enjoys coaching intramural sports for individuals with
special needs. Bill is committed to promoting the interests of ISMRD and feels
that he brings to it a fresh perspective with regard to the needs and directions
in which our organization is heading.