Board of Directors

Jenny Jackson is a rare disease patient living with Mucolipidosis type III alpha/beta and a research scientist currently serving as Director of Program Management and Operations at Odylia Therapeutics. She earned her undergraduate degrees in Human Biology and Psychology and a Master’s degree in Physiology from North Carolina State University.

With more than eight years of experience in the biotech industry, Jenny has contributed to the development of small molecule, enzyme replacement, and gene therapy programs targeting a broad range of rare disease indications, including several lysosomal storage disorders. At Odylia Therapeutics, she applies her strategic and operational expertise to advance gene therapy treatments for rare diseases.

Abby is the mother of Layla (born 2019) who was diagnosed with Alpha-Mannosidosis in early 2023. Later that year her family and she returned home to Miami, Florida after successfully completing Layla’s bone marrow transplant in Minneapolis, Minnesota.

When she is not taking care of Layla’s bone marrow transplant aftercare, she runs the publishing company she founded in 2013 which produces annual business reviews, digital content and high level business summits on a variety of US markets.

Abby is proud to join ISMRD in hopes to help other parents find the right resources and information in what can be a terribly confusing and nerve racking time.

Danielle’s first experience with ISMRD was in 2003 when Sarah was finally diagnosed at 3 1⁄2 years old and at that meeting with six geneticists, they had given Jeff and Danielle a torn piece of paper with the handwritten website of www.ISMRD.org with the instruction to find information about this extremely rare disease. A week later they were welcomed down to Baltimore, Maryland for the fine timing of ISMRD’s board meeting. They were able to get firsthand information from the dedicated parents that created this organization. That meeting was life changing for the three of them. Sarah had a successful bone marrow transplant ten months later; she is currently an active board member of ISMRD and an advocate for the Alpha Mannosidosis community.

Danielle strives to carry the torch forward by serving this organization and families within this rare disease community and to be a part of what the future holds in earlier diagnosis and medical breakthroughs.

Nathan Hubbard is a Certified Public Accountant (CPA) for ASML, a global leader in semiconductor manufacturing equipment and a driving force in advanced technology innovation. Outside of his professional work, Nathan is a devoted father and co-founder of The Lost Enzyme Project. He serves as the secretary on the board of the International Society for Mannosidosis & Related Diseases (ISMRD), where he is deeply committed to raising awareness and supporting research for rare diseases.

Darko lives in Ljubljana, the capital of Slovenia, with his wife Mojca and two children: Žiga (born 2007), affected by MLIII, and Daša (born 2010), who is unaffected.

Since leaving his job at Slovenian railways in 1999, Darko has worked at different positions in an IT department at one of Slovenia’s financial institutions.

Darko was impressed with the people he met at the last two ISMRD conferences in Rome, Italy and Atlanta, Georgia. He decided to accept the invitation to become a board member because he considered it a privilege to participate in ISMRD work with the people he had met. He intends to do his best to help ISMRD achieve its goals.

Laurel lives in Montana with her husband and two sons. Her oldest son was diagnosed with Beta-Mannosidosis in 2014 at the age of 4 and received an experimental bone marrow transplant shortly after his diagnosis.

Laurel is a mental health counselor. She holds a BS in Human Development and Family Studies from Colorado State University and a MS in Clinical Rehabilitation and Mental Health Counseling from Montana State University Billings. She is active in disability advocacy and hopes to raise awareness for ultra-orphan diseases, especially Beta Mannosidosis.

Erin Hubbard is the founder of The Lost Enzyme Project and serves as the secretary on the board of the International Society for Mannosidosis & Related Diseases (ISMRD). As a mother of five children, one of whom is affected by the ultra-rare lysosomal storage disorder Beta-Mannosidosis, Erin is dedicated to raising awareness and advancing research for rare diseases. Through her work, she seeks to connect patients, families, and researchers, fostering a community focused on hope, education, and progress.

Fernando lives in Arizona with his wife, Melissa, and their two sons. In 2025, their oldest son, Marco, was diagnosed with Beta-Mannosidosis at the age of 7.

Fernando holds a degree in Industrial Engineering from Arizona State University and serves as Director of Supply Chain at Penguin Solutions, a leading global technology company.

Fernando is also an active member of The Lost Enzyme Project, a non-profit foundation committed to advancing research and developing a treatment for Beta-Mannosidosis.

Lama is mother of 3 boys, the youngest being Rayan who is affected with Fucosidosis. They live in Saudi Arabia, originally from Jordan.
Lama holds a university degree in civil engineering. She left work to be a stay-at-home mom. Being surrounded with medical people in her family has helped her to diagnose her son with this rare disease. She aims to help other families, and guide them to the right path of a diagnosis. In the Middle East there is little information about Fucosidosis and related diseases, because it is hard to get a test for diagnosis of the rare diseases.

Tareq is an Anesthesia consultant doctor. He lives and works in Saudi Arabia with his wife, Lama, and their three sons. The youngest, Rayan, is affected with Fucosidosis.

Tareq has wide knowledge and experience in the medical field, and has made many critical decisions on Rayan’s journey to help Rayan have a normal lifestyle. His target is to assist other families with metabolic disease children, and support research in this field.

Paul Murphy is the founder and first President of ISMRD. He served in this position from 1999 to 2006 and remained a Board member through 2007. It was after the diagnosis of his daughter, Taryn, with Alpha-Mannosidosis at age ten in 1994 that he became obsessed with learning more about the disease. His searches led him to the still evolving Internet of that time, when only dial-up connections with very slow speeds existed. Through this technology he was able to make connections that led to the creation of a website for families of children with rare diseases. He negotiated a free sponsorship for this site, Rare Genetic Diseases In Children, via NYU Medical Center and it went live in 1996. Through this website he found skilled professionals and families affected by Mannosidosis. Among these were Dag Malm, M.D. who was part of a research group in Norway focused on Mannosidosis. Doctor Malm was also the father of two girls with the disease, which gave him a unique perspective on the challenges ahead.

Paul also made significant contacts with both the National Tay-Sachs & Allied Disease Association and the US National MPS Society. He volunteered and helped remodel or redesign their existing or initial websites.

All this was part of the foundational building blocks that led to the creation of ISMRD in 1999. Paul’s first mission was attending a European MPS Society scientific and family conference in Vienna, Austria. There he met and recruited several physicians and researchers to serve on ISMRD’s first Scientific Advisory Board. Additionally, at this time, Paul became a member of the Board of Directors of the Genetic Alliance, a US-based organization advocating for all genetic diseases. Serving on this Board enabled Paul to enlist the National Institutes of Health’s Office of Rare Diseases to help underwrite ISMRD’s first international conference on Glycoprotein Storage Diseases in 2004.

To learn more about ISMRD’s growth through its first 20 years watch the video Celebrating 20 Years: An Historical Overview of ISMRD on YouTube.

Today Paul is the primary caregiver of his daughter who celebrated her 40 th birthday in 2024. They reside in Cockeysville, Maryland just outside Baltimore.

John became a board member of ISMRD in 1999, very soon after it was incorporated as a non-profit. He has held roles as Vice-President and President over the years, and assisted with research and fundraising efforts. His connection with ISMRD stems from his twins, Timothy and Hollie, being born with Alpha-Mannosidosis in 1974. Finding other families in the 1990s was a game changer for him and his wife Judith in understanding what was happening, and improving their care. This experience motivated John to help improve the knowledge available to new families and help promote research efforts.

In addition to his ISMRD connections, John set up and led Lysosomal Diseases NZ from 1999 and the NZ Organisation for Rare Disorders (2000 to 2015). Over recent years he has gradually retired from full-time rare disease advocacy work.

John stepped down from ISMRD’s board in 2019 to deal with a number of family health issues and to be the primary carer for Hollie, who had increasing care needs. Hollie died in July 2021. He has maintained contact with ISMRD through its social media channel and still provides support to families with Mannosidosis when questions arise, and occasional advice to the ISMRD board.

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, industry and other support groups to improve outcomes for families with Lysosomal Diseases.

Jenny joined the board in 2004 and was an active member until her resignation in November 2020. She now works in an advisory capacity as Board emeritus.

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.

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.

Mark stepped down as a board member at the end of 2022. He has been with ISMRD for twenty years, holding different positions at ISMRD Board including the positions of President and Treasurer. Mark has worked very hard for our nine diseases. He has shown enormous dedication and commitment to our cause, helping to guide the Board with his extensive knowledge and expertise.

Pam was mother to Autumn who had MLIII. Pam and her husband, David, live in Arkansas and are parents also to another daughter, Michelle.

Pam 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.

Pam stepped down from the ISMRD board in 2015 following Autumn’s death in November 2014. She is now retired from hairdressing and stays active by walking 3 miles 5 days a week and participating in more activities in her church.