ISMRD is an all-volunteer organization, with the exception of the Executive Director, 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. The Executive Director is a non-voting member of the Board.

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. If you are interested in learning more about the duties and qualifications of our Board or are interested in becoming a member, please contact John Forman

The current members of ISMRD Board of Directors are as follows:

President
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

Executive Director
Terri Klein
United States
Profile: Terri’s daughter Jennifer is her youngest and affected with Mucolipidosis II/III. Jennifer was diagnosed at 8 years of age – as the delayed onset of the disease led to obstacles in diagnosis.

In January 2006 Terri accepted the position of ISMRD’s first Executive Director. She has 20 years business experience in Human Resources with a Global Industrial Engineering Company and as a Top Real Estate Broker in the Ann Arbor, Michigan Area with Real Estate One, Inc. Currently she is pursuing a master degree in International Economics from the University of Michigan and is of the highest accreditation of certified Realtors among the National Association of Realtors in the U.S.

Her background working with families and corporations on a global level have been unique assets brought to the Board of ISMRD. Terri works actively in fundraising events, is a current member of Real Estate One’s Charitable Foundation Service Group and is a member of The National MPS Society in the United States.

Vice President and Treasurer
Mark Stark
United States
Profile: Mark Stark is Vice President and General Manager for Fab Operations Services (FOS) of Applied Materials, Inc. FOS 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.

At Large Members:

Barbara K. Burton, M.D.
United States
Profile: Dr. Barbara K. Burton is a Professor of Pediatrics at the Northwestern University Feinberg School of Medicine and Clinical Practice Director in the Division of Genetics, Birth Defects and Metabolism at Children’s Memorial Hospital in Chicago. Her major clinical and research interests are in the area of inborn errors of metabolism.

Dr. Burton is Board certified in Pediatrics, Clinical Genetics and Clinical Biochemical Genetics. She is the past President of the Chicago Pediatric Society, and currently is President of the Society for Inherited Metabolic Disorders. She is Chairman of the Genetic and Metabolic Advisory Committee to the Illinois Department of Public Heath. Dr. Burton is also a member of the Medical Advisory Board of the Make A Wish Foundation, the Propionic Acidemia Foundation and a member of numerous national societies including the American Society of Human Genetics and the American College of Medical Genetics.

Dr. Burton has contributed over 100 articles and chapters to the medical literature, many of them focusing on the diagnosis and treatment of inborn errors of metabolism and on the prenatal diagnosis of genetic disorders.

Andrea Gates
United States
Profile: Andrea Gates is the mother of Spencer, who is affected by Mucolipidosis III. She is an energetic, motivated advocate for children and adults affected by Glycoprotein Storage Diseases.

Linda Nagy
United States
Profile: Linda Nagy is a Bookkeeper and Payroll Administer for Lorig Construction Company, a successful road builder in the Chicago, Illinois area.

Linda's family includes her husband Frank who equally shares and supports her commitment. She has two sons, Frank and Joseph. The youngest one, Joseph, has Mucolipidosis Type III.

Linda has a strong dedication to early detection, family support, and pursuing avenues that will lead towards finding effective treatments and eventual cures for all lysosomal storage disorders. Her enthusiasm and willingness to help is a great asset to our board. She looks forward to growing in this position.

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.

Carolyn Paisley-Dew
Australia
Profile: Carolyn is the mother of Matthew, who was affected by Fucosidosis. Matthew passed away in 2006 at the age of 10. Carolyn intends to honor Matthew's memory by helping ISMRD achieve its goals, not only for Fucosidosis but for the other Glycoproteinoses, as well.

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. 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.