Our Board of Directors is passionate about improving the lives individuals and families affected by Okur-Chung Neurodevelopmental Disorder (“OCNDS”). They have been charged with diving deep into their rolodexes to help us accomplish our goals and objectives. Their expertise in their individual fields will help us achieve our goals. We have some lofty but realistic goals that will be achieved with hard work, determination and strategic fundraising. More importantly, these goals also can’t be achieved without our OCNDS community collaborating and working as one. Our Parent Advisory Board (“PAB”) plays a vital role in ensuring the patient voice is heard and represented in all aspects of our foundation. Our PAB advises our Board of Directors, brainstorms ideas and shares insights from the parent perspective related to OCNDS.
Our 2018-2020 objectives are:
- STRENGTHEN communication, offer encouragement and provide resources to OCNDS families via our website and social media pages.
- DEVELOP reagents and make them widely available to researchers which will make it easier for researchers to develop treatments for OCNDS and gain a better understanding of OCNDS.
- SUPPORT research that will help us begin to understand the biochemistry of OCNDS.
- ESTABLISH & MAINTAIN a patient registry program.
- FACILITATE & PLAN an in-person family meeting to foster hope, community, collaboration and a further understanding of OCNDS.
- RAISE the profile of this ultra rare disorder through media attention, the creation of a public awareness campaign and the formation of a strong advocacy group.
Jennifer Sills is the President and Founder of the CSNK2A1 Foundation. She was inspired to become an advocate for individuals and families affected by Okur-Chung Neurodevelopmental Syndrome (“OCNDS”) following the 2016 diagnosis of her daughter, Juliet (“Jules”).
For years, Jennifer and her family searched for a diagnosis to better explain the symptoms plaguing Jules since birth; some symptoms were similar to Autism while others were inexplicably different. With so few available explanations, the search to find ways to help Jules was an isolating and heartrending one. But in 2016, with the help of breakthroughs in the science of genetic testing, Jules was diagnosed with OCNDS, a rare genetic syndrome. At the time, Jennifer only knew of 5 other patients with OCNDS. Jennifer was determined to figure out how to further OCNDS research as well as find and support individuals with OCNDS. In 2018, Jen and her husband Jason launched the CSNK2A1 Foundation.
Prior to her work with the CSNK2A1 Foundation, Jennifer worked as an Estate Planning and Tax Attorney, advising local non-profit organizations on planned giving and fundraising. Jennifer is active in her own community and in other nonprofit organizations. She serves as a Board Member for BOK Ranch, a non-profit organization providing therapeutic horseback riding for clients with special needs. She also serves on the West Coast Advisory Council for the Child Mind Institute, an independent, national nonprofit dedicated to transforming the lives of children and families struggling with mental health and learning disorders. She is a founding board member of the Live Like Leo Foundation, a non-profit foundation dedicated to giving young minds and their families opportunities to become global citizens, empowering them to lead their communities with compassion and inclusion in order to create a kinder and more connected world. She is also a member of the Simons Searchlight Community Advisory Committee (CAC) which advises and guides research and community activities on behalf of all Simons Searchlight participants and gene groups.
Jennifer received a B.A. from the University of California, Berkeley, and her J.D. from Pepperdine University. She currently resides in the San Francisco Bay Area with her husband, Jason, their 2 children and their mini zoo consisting of 2 cats and 2 dogs.
Kathryn O'Connor Gardner - With over 20 years of experience on Wall Street, Kathryn has a demonstrated focus on women, developing a program for high-performing females on the sell-side, actively collaborating with other women on the buy-side, and serving as an advisor for female-founded companies. She has experience serving as an advisor for startups on strategy, financial analysis and capital market transactions.
Kathryn is a Senior Analyst at Livello Capital Management. Prior to that, Mrs. O'Connor Gardner worked as a Senior Vice President and Corporate Credit Research Analyst within AllianceBernstein’s high-yield research group, focusing on the energy sector. There she oversaw all energy-related investments for traditional high yield portfolios with roughly $35 billion in AUM. Mrs. O'Connor Gardner was also an Investment Committee Member for the Energy Opportunity Funds at AllianceBernstein (2016-2019).
Prior to joining AB, Mrs. O'Connor Gardner was a Managing Director on the sell-side at Deutsche Bank where she covered industries including energy, automotive and aerospace & defense (2004-2015). Mrs. O'Connor Gardner started her career as an analyst at Deutsche Banc Alex.Brown in the Investment Banking division and worked in private equity prior to returning to Deutsche Bank in 2004 (1998-2003). Mrs. O'Connor Gardner holds a B.S. in economics and a B.A. in business administration (Walter A. Haas School of Business) from the University of California, Berkeley.
In 2019, Mrs. O'Connor Gardner was elected to the GSE Systems (Ticker: GVP) board as an independent member; she is the Chair of the Nominating and Governance Committee and sits on is both the Audit and Compensation Committees. Mrs. O'Connor Gardner is a founding board member of the Haas Center for Gender, Equity & Leadership, which seeks to build the economic case for supporting workplace diversity, and is a member of the Haas Dean's Advisory Circle, which brings together the school's next generation of leaders.
She currently resides in New York City with her husband, John Gardner, an entrepreneur and founder himself, and as well as their two children, Jack and Cole.
Catherine Landers is an advocate and attorney with 15 + years’ experience in policy, communications, community outreach, and management. She has held senior management and communication roles on a number of electoral and advocacy campaigns at both the federal and local level. Catherine currently serves as Deputy Director for Special Projects for L.A. City Councilmember David Ryu, after assisting with his historic campaign win.
In 2015, Catherine worked as an Honored Guest Manager for the Special Olympics World Games, the largest sporting event held in Los Angeles since 1984 Olympics.
Catherine has a B.A. in Economics from the University of California, Berkeley and a J.D. from American University, Washington College of Law and lives in Southern California.
Jennifer Allen is a Senior Director in the Data & Analytics group of the FTI Consulting’s Forensic and Litigation Consulting segment and is based in Chicago. Ms. Allen has more than fifteen years of litigation advisory experience, working in areas of complex data analysis, financial investigation, forensic accounting, anti-money laundering, litigation support, health care compliance review, data warehousing, insurance claim calculation and financial auditing. Ms. Allen specializes in bringing together large, disparate data sets to perform complex analysis on financial records. Ms. Allen has also consulted in a performance improvement capacity with distressed companies looking to increase profitability and cash flow. Ms. Allen has experience in a wide range of industries, including financial services, telecommunications, government, entertainment, insurance, food service, and health care. Ms. Allen previously worked at Arthur Andersen and KPMG prior to joining FTI Consulting. Ms. Allen is graduate of the University of California at Berkeley, Haas School of Business, with a B.S. in Business Administration. Ms. Allen is an active member of, and mentor in, the volunteer organization Partnership to Educate and Advance Kids (“PEAK”) which provides four-year scholarships to a private Chicago high school to academically average students with untapped potential throughout the city of Chicago.
Francesca DeMartino has 20 years of combined experience in Communications and Finance. She currently works at Medtronic as Vice President, Communications for the Diabetes Group. Over the span of her 20-year career, she has served in multiple communications leadership roles, including VP, Investor Relations and Corporate Communications for Macrocure Ltd, and Director, Worldwide Communications at Johnson & Johnson. Francesca began her career as a Financial Analyst in the Healthcare Investment Banking Group at Deutsche Banc Alex Brown. She earned a B.A. in International and Area Studies from the University of California, Berkeley, and a minor in Business Administration from the Walter A. Haas School of Business. She was also a visiting student at Barnard College, Columbia University. She is a native English and Spanish speaker and has lived abroad in Mexico, Spain and the United Kingdom. Francesca and her husband, David, reside in Studio City, California, and New York City.
Dr. Elizabeth “Libbie” Prescott works at the intersection of science, technology, and policy at the National Academies of Science, Engineering, and Medicine. Previously, Libbie was a Professor of the Practice for the Science, Technology and International Affairs program in the School of Foreign Service at Georgetown University. Libbie has served in government at the Department of State, Department of Defense, and the intelligence community as well as the Senate Committee on Health, Education, Labor and Pensions as an AAAS S&T Policy Congressional Fellow working for the Health Office of Senator Edward M. Kennedy.
Outside of government Libbie worked as Practice Head for Biosecurity at the Eurasia Group; a Research Fellow at the International Institute for Strategic Studies-US; a Mirzayan Fellow at the National Academy of Science’s Board on Science, Technology & Economic Policy; and consulted for the Strategy Division of the National Health Service in the United Kingdom. Libbie has been on the Steering Committee for the Aspen Institute’s Socrates Program and is a former Council on Foreign Relations Term Member; Center for New American Security Next Generation National Security Leader; German Marshall Fund Young Strategist; GPPi Global Governance Futures Fellow 2027; and Truman National Security Project Fellow.
Libbie has her doctorate in molecular biology from the University of Oxford, Balliol College and dual degrees with high honors in Economics and Molecular & Cell Biology from the University of California, Berkeley. As a recovering scientist, in her downtime Libbie enjoys scuba diving and the challenges of urban gardening.