Board of Directors

Jackie JamesJackie James, President
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.

Mark and family Mark Stark, Treasurer
United States

Profile: Mark Stark is the Principal at Stark Tech Consulting, a consulting firm specializing in high-tech product development and market launch.

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 currently Executive Director of the Healthier Kids Foundation of Santa Clara. The mission of Healthier Kids Foundation is to ensure access to and advocacy for health care services for all children through family-centered and innovative approaches, and she is a board member of a number of California based non-profits.

JennyJenny Noble
Vice President, Administration
New Zealand

Profile: 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 and has been in this role since 1999. Jenny joined the Board of Directors in 2004. 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.

JohnJohn Forman
Vice President, Research
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 research for ISMRD.

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), and ICORD, the international Conference on Rare Disorders and Orphan Drugs. 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.

JuanitaJuanita Van Dam, Board Member
Chair Fundraising Committee

Profile: Juanita is the mother of 3 children, 1 unaffected Jayden and 2 with Mucolipidosis III Damian and Jesse-Rose. When they were diagnosed I was devastated to find out there is no known cure. I feel very fortunate to have found ISMRD & family support groups online.

Until now I have been very passionate in the Union and Labor movement for people's rights & conditions in Australia. I believe this will now carry me through to advocate and push for a cure for ML3. I work full time in Human Services and spend my spare time with my gorgeous children to enjoy as much life as we can, while we can

CarolynCarolyn Paisley-Dew, Board Member

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 for Barnardos Australia, supporting foster carers.

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.

TishPatricia Adkins, Board Member
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.

Paul Wagner, Board Member

United States

Profile: Paul is a father of four and a grandfather of two, one of whom is affected by Mucolipidosis II. Before retiring in 2014, Paul held leadership positions in IT (Crate and Barrel, Wolters Kluwer), Marketing (Wolters Kluwer), and Fundraising (WTTW/Chicago’s Public Television station).

Since retiring Paul has enjoyed traveling with his wife, Susie, spending more time with his children, sitting for his grandchildren and being involved with several philanthropic organizations. He looks forward to the time when no families will have to contend with any of the glycoprotein storage diseases.

Pam1Pam Tobey
Board Emeritus
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.