Governance

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 info@ismrd.org.

Board of Directors

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

Photograph of Mark Stark. President
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.


JennyNVice President, Administration
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 Field Officer and Administrator 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.


Pam Tobey. Vice President, Fundraising
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.


John FormanVice President, Research
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.


At Large Members

Photograph of Andrea Gates. 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.

 


JackieJackie James
United States

Profile: Jackie James is the mother to Anna who is affected by Mucolipidosis III. Jackie and her husband Bret also have a son, Peter who is unaffected. Jackie keeps busy running her English tea room in St. Louis, MO, home schooling Anna and taking care of her family. She is looking forward to working toward raising as many funds as possible for ISMRD and helping to move forward the ISMRD mission.


Susan KesterSusan Kester
United States

Profile: Susan is mother to Lonnie Tice, 23, who is affected by Mucolipidosis Type III.  Susan has two other children, Chris and Sarah, who are unaffected.  Susan is employed as a cafeteria manager, with the school system in Lee County, Flordia. 

Susan is an active volunteer with the music department at the local high shool that all three of her children attended.  Susan is looking forward to working with our Glycoprotein Storage Disease families to help accomplish the mission of ISMRD.


Carolyn Paisley-DewCarolyn
Australia

Profile: Carolyn joined the ISMRD Board following the death of her son in September 2006 at the age of 10. Matthew had Fucosidosis.

Carolyn, her husband Chris and their two other children, Isabella and Dominic, live in Canberra, the capital of Australia.  Carolyn works as a consultant, training individuals ot use voice-activated computer software.

She holds an Honours degree in French, with sub-majors in Mathematics and Psychology from the University of Western Australia, and a Graduate Diploma in Management from Monash University, Victoria, Australia.

Carolyn's dream is to see newborn screening and treatments for all the glycoproteinoses.


Patricia AdkinsTish
United States

Profile: Tish’s first child, Jamie had I-Cell and passed away in 1977 at the age of 2 ½. Before attending ISMRD’s Natural History Study and Family Conference in Charleston in 2012, she had never seen another child or talked with parents of a child affected by ML, or any other glycoprotein diseases. Instantly she fell in love and wanted to do her part to support families, promote ISMRD, and help connect parents whom feel so isolated when they receive the devastating news concerning their child’s future.

Tish lives with her husband Mike in Chesapeake VA, has two other unaffected children, three stepchildren and seven grandchildren.


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