About the WSS Foundation
Wiedemann-Steiner Syndrome will be understood globally and all those diagnosed will reach their greatest potential.
The Wiedemann-Steiner Syndrome Foundation (WSS) serves as the cornerstone of knowledge for individuals affected by the syndrome, their families, physicians, and researchers. Together we advocate for comprehensive research with meaningful discoveries and connect the WSS community through thoughtful engagement.
- Nurturing lifelong learning
- Supporting meaningful connections
- Encouraging Intentional collaboration
- Acting as thoughtful stewards
The Wiedemann-Steiner Syndrome Foundation’s financial objective is to minimize administrative costs and maximize research focused on components of WSS, thus conducting itself in an economical manner.
Meet Our Board Members:
President and Board Member
Libby Woolford is the WSS Foundation President and Board Member. 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. Libby, her husband, and two children reside in Sacramento, CA. 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.
Treasurer and Board Member
Christina O’Keeffe is the WSS Foundation Treasurer and Board Member. She lives in Columbus, Ohio with her husband and two children. Her youngest son is diagnosed with WSS and inspires her advocacy work for children with special needs and those with disabilities to achieve their full potential. She has more than 15 years of leadership experience in state government, non-profit and grassroots organizations and is an active member in her community to address socioeconomic issues. Christina is a Certified Economic Development Finance Professional and holds a Bachelor of Science in Natural Resources and Economics from The Ohio State University.
Secretary and Board Member
Kirsten Stuart is a WSS Foundation Board member. Kirsten’s background is in the area of language development and learning. She worked as a speech and language therapist in Pasadena California for 15 years focusing on language based learning differences and later in the area of early intervention. Her son Nikola was diagnosed with WSS at the age of 8 after an exhausting search for answers. Ms. Stuart now works in Santa Barbara CA working for a non-profit that financially assists families who have a child battling cancer. She is committed to increasing awareness for rare diseases of all types.
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).
Jacob Cummings is a board member of the WSS Foundation. Jacob and his family (wife Maria and 5 Children) are lifetime residents of Minnesota. Jacob and Maria’s second son Dylan was diagnosed with WSS in January 2014, one of the first 20 diagnosed cases in the world. At that time there was no support network available for families, this was seen by both Maria and Jacob as their higher calling to provide a network for others to lean on in the future. Jacob has 18 years of executive level medical sales and marketing experience, a unique asset for the foundations goal of promotion, advocacy, and growth.