Jorey Barry, President and CEO, Immune Deficiency Foundation
Jorey Barry is President and CEO of the Immune Deficiency Foundation (IDF). In this role, she provides strategic leadership, in partnership with the Board of Trustees, and has operational responsibility for essential IDF programs that benefit the primary immunodeficiency community. Barry promotes and fosters IDF’s mission — building relationships with key constituencies with a goal of increasing impact and improving outcomes. She holds a steadfast commitment to IDF’s vision to improve the quality of life of those affected by primary immunodeficiency so that they can live with fewer health complications.
Before joining IDF, Barry was with the March of Dimes for 20 years. She has served as Vice President of Change Management, Vice President of Organizational Effectiveness, Area Director, Regional Director of Public Affairs, and State Director of Public Affairs. Having held key roles in volunteer development, mission, operations, revenue, culture change, and internal communications, Barry has developed a deep understanding of the nonprofit sector. She has a wide breadth of experience across multiple functional areas, including developing and implementing new operating models, restructuring, and transformation initiatives.
Barry earned her degree from Texas A&M University with a major in English and a minor in psychology.
Nicholas Brooke, Founder, The Synergist
Nicholas Brooke is the founder of The Synergist — an incubator that brings key players together in people-public-private partnerships with the express aim of solving significant societal problems through collective action. He is also the Executive Director of Patient Focused Medicines Development (PFMD), a pre-competitive, multi-stakeholder global collaborative platform dedicated to stimulating innovation in medicine and device lifecycles, digital health, and health system through systematic patient engagement, with patients.
Brooke is an economist by training and was previously Chief Executive Officer of an award-winning digital consultancy, providing a cutting-edge digital strategy to global corporations across multiple sectors
Lisa Butler, Executive Director, GBS/CIDP Foundation International
Lisa Butler officially joined the Foundation staff in December 2013. She first learned of the Foundation in 1992 when her father-in-law was diagnosed with Guillain-Barré Syndrome (GBS). 10 years later, her son was also diagnosed with GBS. Following her son’s recovery, Butler became the parent liaison for the Foundation for “parents with children diagnosed with GBS.”
Butler has served as Executive Director of the Foundation since 2015. Prior to this role, she managed the Foundation’s marketing and development programs. She was recently recognized by Patient Services Inc. with the 2016 Extraordinary Support Award. She also joined the Board of Directors for the National Health Council (NHC) and is a member of the Finance Committee.
Butler earned a bachelor’s degree in English and has an extensive career in marketing and event planning for nonprofits. She enjoys spending time with her husband Tom, their three sons, yoga, reading, and spending time outdoors.
Leah Howard, J.D., President & CEO, National Psoriasis Foundation
Leah M. Howard, J.D., is President and CEO of the National Psoriasis Foundation (NPF). A lawyer and patient rights advocate, she leads the largest psoriatic disease support and research nonprofit organization in the world. NPF represents more than eight million individuals in the U.S. who live with psoriasis and psoriatic arthritis with the shared vision of creating a world free from the burdens of psoriatic disease.
Howard has lived with psoriasis for 21 years and has more than two decades of experience working with national health and disability organizations, local governments, and leading health care and research institutions. She believes that solving today’s health care challenges begins with talking individuals living with chronic diseases. Over the last decade, Howard has empowered people with psoriatic disease to share their challenges with policymakers at the state and federal levels, as well as with regulators, and health agency management. This led to several improvements for the community, including over 40 new state laws improving access to treatment.
Howard has a bachelor’s degree in government and international relations from the University of Notre Dame and a law degree from George Mason University School of Law.
Randy Rutta, CEO, National Health Council
Randall “Randy” Rutta joined the National Health Council (NHC) in February 2021 as the organization’s CEO. In this role, Rutta is proudly leading the NHC — as it enters its second century — with the goal of affecting change across the entire health system and promoting increased access to affordable, high-value, sustainable health care. The NHC brings diverse organizations together to forge consensus and drive patient-centered health policy, and Rutta inspires NHC staff to implement a Board-driven strategic plan and public policy and advocacy efforts.
Prior to joining the NHC, Rutta was the President and CEO of the American Autoimmune Related Disease Association (AARDA), a national organization dedicated to addressing the problem of autoimmunity. AARDA initiated and hosts the 40-member National Coalition of Autoimmune Patient Groups and is a longtime member of the NHC. Prior to his role as President and CEO, he served as AARDA’s Federal Policy Consultant.
Rutta holds a master’s degree in politics with a focus on international health policy from Catholic University of America in Washington, DC, and a bachelor’s degree in sociology from the University of Minnesota in Minneapolis, Minnesota.
Jeff Todd, J.D., President and CEO, Prevent Blindness
Jeff Todd, J.D., currently serves as President and Chief Executive Officer of Prevent Blindness, where he oversees an organization established in 1908 to prevent blindness and preserve sight across all age spectrums. Prevent Blindness educates the American public on the importance of taking care of their eyes and vision by promoting advances in public health systems of care that support eye health needs and by advocating for public policy that emphasizes early detection of vision problems and access to appropriate eye care.
Todd joined Prevent Blindness in 2003 as Director of Public Health and later served as COO until becoming President and CEO in April 2018. His contributions to the organization include establishing the National Center for Children’s Vision and Eye Health, fostering an annual national summit as a forum for the exchange of ideas relating to vision and public health, and overseeing the development of leading public health research, which has become widely used to capture the prevalence and cost of vision problems across the U.S.
Todd has a J.D. degree from Indiana University Robert H. McKinney School of Law, an Executive Education Certificate from Northwestern University Kellogg School of
Management in Leading Change in Nonprofits, a master’s degree in communications from Butler University, and a bachelor’s degree in business from Indiana University Bloomington.
Leanne West, President, International Children’s Advisory Network
Leanne West serves as President of the International Children’s Advisory Network (iCAN). Since 2014, iCAN has continued to foster greater global understanding about the importance of the pediatric patient and caregiver voice in health care, clinical trials, and research. iCAN provides its members opportunities to share their experiences with organizations like the Food and Drug Administration (FDA), AAP, and Centers for Disease Control (CDC). It is also an official partner of the FDA’s Center for Devices and Radiological Health (CDRH) as an official member organization of the Patient and Caregiver Connection Partner and Total Product Life Cycle Advisory programs.
West is a patient advocate for one of her two rare diseases, serving on the Foundation for Sarcoidosis Research Patient Advisory Council and Speaker’s Bureau. From 2007 to 2008, she served as the twice-elected Chair of the Georgia Tech Executive Board, and in 2017 she served as the GT Chair of the State Charitable Campaign.