ISMRDGovernance
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. 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.
Annual Reports
Download the ISMRD annual reports (pdf format):
Board of Directors
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.
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.
Secretary
Jenny Noble
New Zealand
Profile: Mrs. Jenny Noble is the parent of two young adults with Mucolipidosis Type III (Pseudo-Hurler Polydystrophy).
Since the diagnosis of her two children Jenny has spent many years searching and advocating for innovative ways to manage the complications of Mucolipidosis. Through this advocacy Jenny has built up strong international networks with Professionals, Families and other support groups to improve outcomes for families with Lysosomal Diseases.
Jenny is currently a Trustee and Secretary for Lysosomal Diseases New Zealand and is the Project Manager for the New Zealand Organisation for Rare Diseases. 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.
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.
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, her husband Chris and their remaining two children live in Canberra, the capital of Australia.
Carolyn holds a Bachelor of Arts with Honours in French and a Diploma in Management. She works for the Australian Government on disability and carers’ issues. In her own time she advocates for people with disability and their carers. Her dream is to see newborn screening and treatments for all the glycoproteinoses.
Pam Tobey
United States
Profile: Pam is the mother to Autumn who is a MLIII adult. Pam and her husband, David, live in Arkansas and are parents also to another daughter, Michelle. She is a hairdresser and owner of her own salon.
Pam has conducted several fundraisers in her very small town....from baking and selling giant cookies to having gigantic yard sales. She is extremely passionate about finding funds for the ISMRD and dreams of the day when research is "rolling" and a cure found for Glycoprotein Storage Diseases.