Meet our Board
All of our founding board members are parents of children with GRIN Disorders.
Keith brings a wealth of senior leadership experience to his role, in business and the non-profit sector. He is a published author and podcaster, and previously a newspaper reporter. His son, Bryson, was diagnosed with a GRIN gene disorder in 2015.
In 2018, Keith and his wife, Laura, created a GRIN family conference and invited some of the world's top researchers. The message he heard from the researchers - that a cure for GRIN Disorders is possible - led Keith to commit his life to finding a cure. Since then, he has been connecting with researchers around the world to drive GRIN research.
CEO and Head of Science
President and Marketing Communications Lead
Denise has 20+ years of experience in corporate communications leading product launches for global organizations including Cisco, IBM, and Yahoo. She leverages her communication and event marketing background to build awareness of GRIN Disorders.
Her world was completely changed when her son, Brett, was diagnosed with a GRIN gene disorder shortly before his first birthday. She now considers it her life purpose to find a cure for GRIN Disorders. Denise believes parents hold the power to accelerate research and drive progress.
CureGRIN benefits from Denise’s resourcefulness and ability to inspire people to accomplish common goals.
Klara is the mother of two-year-old Tomas, who was born with GRIN1 mutation. Overnight, she became his caregiver, but also therapist and advocate. Shortly after her son's diagnosis, she became involved in research opportunities. Her family made a conscious decision to try new therapies, not only to try and help their son, but also to further and aid research. She brings to the team a passion to always move forward. She is truly following the legacy of her late daughter, whose motto was to "Never Give Up."
Mary Beth's son, Bowen, was diagnosed at 15 months with a duplication of GRIN2D. Now, almost 3-years-old, Bowen's never give-up attitude and constant smile is what drives her each and every day to fight for a cure. She is his biggest advocate and cheerleader.
Prior to becoming a mother of 3, Mary Beth worked in accounting, finance and private equity. Since then, she has traded in her calculator and spreadsheets for library books. Her second career as a librarian at her daughter's school combines her love of children with her desire to help others. It is this passion which has led her to CureGRIN.
Mary Beth Skarsgard
Jillian Hastings Ward
Jillian is a patient advocate, based in the UK, who has been closely involved with the governance and delivery of the UK's world-leading 100,000 Genomes Project for the past 3 years. The project has sequenced the whole genomes of over 100,000 patients with rare conditions or cancer, and their families, combining this data with their whole life health records in search of a diagnosis and treatment, and continues to push the boundaries of scientific discovery.
Jillian chairs a patient advisory group with oversight of the whole project, as well as reviewing every application from research consortia wishing to interrogate the uniquely detailed project database. Jillian's background is in consultancy and the civil service; consequently, she brings strategic thinking, project management and analytical skills to CureGRIN, as well as her growing interest in the interface between patient interests and research endeavors. Her son is severely disabled due to a GRIN1 gene variant.
Donor Experience and Social Media Management
Social media strategist and avid outdoor lover, Lauren brings her passion for people and most importantly her son, to the team of CureGRIN. Lauren has 10 years public relations experience, 5 years of that with an international non-profit organization.
She is also a graduate of Louisiana Partners in Policymaking, a national leadership training program with the goal of creating effective systems change agents.
Lauren's love for her 3-year-old son, Carter, who was born with a mutation of the GRIN1 gene, has ignited a new ambition and purpose in life...finding a cure for GRIN.
Aukje van Gerven
Aukje loves to travel, and aimed for a lifetime of adventure. She holds a Masters degree in Law and History, cycled from Tanzania to the Netherlands, was the Director of a non- profit organisation, Respect the Mountains, for five years, and now works as the Operations Manager for The European Safari Company.
When her second daughter, Thura, was born, family adventures were put to a screeching halt and life suddenly looked a lot different. Thura was diagnosed with a GRIN2B mutation when she was 10 months old, and she is severely disabled.
With support, Aukje’s family can now enjoy small adventures again, and Aukje is committed to help improve the lives of people living with GRIN Disorders - children and parents alike. She hopes to bring her organisational skills, empathy and energy to CureGrin - motivated to make a difference.
Paul’s son, Austin, now 16 years old, was diagnosed with GRIN2A at age 11. Austin was one of the first patients accepted into the diagnosed disease program at the National Institute of Health in Bethesda, Maryland and was the 1st patient to be diagnosed with GRIN2A mutation deficiency. From there, NIH requested the assistance of Dr. Stephen Traynelis of Emory University to better understand GRIN2A.
Paul is a retired NYPD Detective and the founder of Austin’s Purpose, which have been raising funds to support GRIN Research since 2015. He is committed to finding a cure for GRIN Disorder.
© 2020 by CureGRIN Foundation