Meet Our Board Members:
Libby Woolford
President and Board Member
Libby Woolford is the WSS Foundation President, Board Member and Chairs the Community Board Committee focused on conference, regional ambassadors and other activities to unite our global WSS community.
Libby, her husband, and two children reside in Sacramento, CA. Her daughter was diagnosed with WSS in March of 2014 at the age of 20 months via whole exome sequencing. Since that time, she and her family have been committed to learning more about WSS, supporting those affected by WSS and rare diseases, and navigating processes and resources to encourage research of WSS to ultimately benefit the lives of those affected by WSS.
She graduated from Loyola Marymount University with a degree in Liberal Arts and a multiple subject teaching credential. Formerly an elementary and middle school teacher, Libby has been a realtor in Sacramento since 2006. She also holds a Governor appointed seat on California’s Interagency Coordinating Council on Early Intervention.
Tobias Davis
Board Member
Tobias, his wife Delphine and their two children April and Isla, live in Berkshire in the UK. Tobias’ youngest daughter April was diagnosed with WSS following whole genome sequencing at the age of 3 in 2022. Since then, navigation of the health care and schooling system in order to ensure the best level of care and support for April has been a ongoing pursuit and he hopes to be able to support improvement in navigating those pathways and improving those services for other affected families in the future.
Tobias holds a BSc in Biochemistry and an MSc in Medical Technology Regulatory Affairs and currently works for Johnson & Johnson as Regulatory Affairs Director in their MedTech Surgery business. Tobias also serves as Chair of the London-Surrey Borders Research Ethics Committee as part of the NHS HRA in the UK, providing Ethical approval UK clinical trials for medicines, devices and other qualitative and data based research.
Kim Lagravinese
Secretary and Board Member
Kim Lagravinese is a WSS Foundation Board Member. She lives in New York with her husband and three children. Her son was diagnosed with WSS in April 2017 when he was 19 months old. After this initial diagnosis, the WSS Foundation provided Kim and her family with a wealth of information and resources that they had been searching for. She is committed to giving back by promoting WSS research and helping other families navigate their way through WSS diagnoses.
Kim is a Patent and Corporate Attorney, and holds a Bachelor of Science in Engineering and Management, Masters of Business Administration (MBA), and Juris Doctor (JD).
Sarah Spear
Board Member
She lives in Portland, Connecticut with her husband, John, and their two children, Miriam and William. Miriam was diagnosed with ADHD and anxiety before she received her WSS diagnosis at six years (she later received a diagnosis of Autism, as well). The WSS Foundation’s Facebook page became an immediate source of support and information. With her diagnosis, everything Miriam was experiencing made sense.
Sarah dreams of Miriam living a meaningful life with the greatest independence possible. Sarah endeavors to increase belonging for people affected by disability, including caregivers. She is excited to use her background in fundraising to ensure a strong donor base that supports the foundation’s work.
Sarah is an author and fractional COO for startups. Previously, she founded and ran a startup for users to recommend accessible businesses. Sarah has also led fundraising and operations at a human rights organization in Connecticut, served as Executive Director of an economic development fund in Missouri, and co-founded a healthtech company in India. She earned her bachelor’s degree in chemistry from Gordon College and her MBA from University of California, Irvine. Sarah serves as a Board Member of Portland Public Schools.
Rebekah Butler
Board Member
Coming Soon
Thor Misko
Chief Operating Officer and Board Member
Thor Misko is the WSS Foundation COO and Board Member.
He lives in Greendale, Wisconsin with his wife, Lisa, and their three children. His middle child, Ryker, was diagnosed with WSS in June of 2017, when he was 17 months old, via whole exome sequencing. Thor and Lisa are passionate advocates for their son, trying their best to provide him with the love and support he needs to reach his full potential. They were blessed to find their WSS family, literally moments after diagnosis, and are excited to be part of foundation’s strong community and its promising research.
Thor is the vice president and minority owner of Selzer-Ornst Construction Company. Previously, he was a program director with the Kern Family Foundation helping universities transform their engineering programs and the vice president of development for PLTW – the nation’s largest K-12 STEM education program. Thor earned his bachelor’s degree in architectural engineering from MSOE. He is also a Lean Six Sigma Green Belt, a U.S. Green Building Council LEED Accredited Professional, a MSOE Corporation Board Member, and a Greendale School District Board Member.
Annabel Corbett
Board Member
Annabel Corbett is a WSS Foundation Board Member. She lives in London, England, with her husband and two children. Her son was diagnosed with WSS in 2015 when he was 8 years old after many years of tests, investigations and huge uncertainty over his future. Annabel is determined to spread awareness of WSS to ensure other families receive an early diagnosis and have access to the support and knowledge of the growing WSS community.
In her “other” life, Annabel has a BA in Law from the University of London, then qualified as a Barrister specialising in criminal law for some 15 years before her current appointment as a District Judge (Magistrates’ Court).
Drew Schaefer
Treasurer and Board Member
Drew Schaefer is the WSS Foundation Treasurer and Board Member.
He lives outside of Louisville, KY with his wife, Kristin, and three children. His youngest daughter was diagnosed with WSS in 2017 at only 10 months old and the WSS Foundation was one of main sources he leveraged that diagnosis day. Drew and Kristin aim to become better advocates for all present and future families affected by the syndrome and Drew appreciates the opportunity to represent the WSS Foundation as another avenue of advocacy.
Drew received a Bachelor of Science in Accounting and MBA from the University of Dayton and has been a Certified Public Accountant since 2006. He has worked in various public and private accounting roles over the past 16 years. Currently, Drew is a partner at SCJ Fiduciary Services, which provides Trustee support services for Employee Stock Ownership Plans (ESOP). Additionally, he serves as CFO for Spark Dental, which provides leadership and organizational support for emerging dental groups.
Alexandra Gillett
Board Member
Alexandra Gillett is a WSS Foundation Board Member, assisting on the Research and Development Committee. She lives in New Jersey with her husband and their son. Her son was diagnosed with WSS in September 2021 at 18 months via whole exome sequencing. Along with the genetics report and a long list of new specialists to see, the genetics team recommended the WSS Foundation as a starting place to look for a family community and further information. Immediately finding people who were so dedicatedly working to help the WSS community in so many ways was very reassuring. After spending the next months interacting and eventually volunteering with the Foundation, Alexandra joined the Board. She is excited to use her experience in the biological sciences to assist on the Research Committee.
Alexandra is a research scientist at the New Jersey Dept. of Agriculture. She received her BS in Entomology and Plant Protection at the Univ. of Delaware and subsequently earned a Doctorate in Entomology from Rutgers Univ.
Meet Our Cheif Scientific Officer:
Helen Hernandez
Chief Scientific Officer
Helen Hernandez M.S., is a relentless optimist, a scientist, and a determined problem solver. She has a B.S. in Biochemistry, an M.S. in Physical Chemistry, and 7 years of industry experience during which she excelled as a Research Chemist. She has 10 peer-reviewed publications including a book chapter and an expert review related to high-throughput drug repurposing screens in neglected tropical diseases. Upon learning about the challenges of rare diseases, through happenstance and through family members’ diagnoses, she turned her attention to the world of rare diseases. She began immersing herself in the landscape, listening to the Once Upon a Gene podcast and attending nearby conferences. In August of 2021, she began her full-time focus on her consulting business, KAL Research Initiatives. Her time is now spent helping patient-led research organizations achieve excellence through advancing their scientific strategies. She also runs the R69 Initiative which aims to end the diagnostic odyssey for individuals (esp. with rare diseases) and to push for diagnostic equity all around the world. Helen is extremely appreciative of the opportunity to serve this great community and all of its ongoing efforts. She is also very eager to immerse herself in the WSS research literature, to uncover gaps that can be filled, and to grow our research network to effectively fill them. Let’s advance research together to improve the lives of all those affected by Wiedemann-Steiner Syndrome!