Founders

Jean Campbell is nationally recognized as one of the leading rare disease patient advocates with an impressive record of success in fundraising, patient advocacy and corporate relations. Jean served nearly two decades with the National Organization for Rare Disorders (NORD) in senior management positions including Vice President of Development.

Under Jean’s leadership, there was significant expansion of several of NORD’s individual and organization membership programs along with the creation of NORD’s restricted research, medical meeting, organization mentor and clinical broadcast programs. Jean played a key role in the establishment of the NORD Corporate Council, and was instrumental in the creation and supervision of the disease specific Patient/KOL Regional meetings.

A well-respected resource in the rare disease community, Jean formed JF Campbell Consultants LLC, in 2010. Her expertise in patient advocacy, organizational governance, corporate relations, patient assistance programs and program management is valuable to all size organizations. Her clients include non-profit health organizations, pharmaceutical and biotech industries. Jean’s goal is to increase a client’s visibility in the health industry as well as create productive partnerships, effective strategic planning, and optimal program development.

In addition, Jean provides valuable mentorship to start-up and growing patient organizations helping to strengthen their infrastructure in order to better serve their mission, members and communities. Jean is a co-founder and board member of the Professional Patient Advocates in Life Sciences (PPALS), a member of the Rare Collective and an Erdheim-Chester Disease Global Alliance Board Member. Jean also serves on MedunikCanada’s Advisory Board, Exceptional Parent Editorial Board, Sanford CoRDS’ External Advisory Board, National Caregiving Council Advisory Board and Atlantic Research Group’s Scientific Advisory Board.

Back at home, Jean volunteers as a reviewer for the United Way of Western Connecticut Grants Program and the City of Danbury Grants Program as well as being the Clerk of the Vestry at St. Matthew’s Episcopal Church in Wilton, CT and an active member of its Outreach Committee.  Jean always finds time to spend with her two granddaughters, her family and friends, checking out the latest movies and always trying to master her ballroom dancing steps!

Chief Patient Advocate, Amicus Therapeutics

Jayne is a long-time patient advocacy professional with expertise on issues affecting individuals and families with rare diseases and the partnership between the patient community and industry in orphan drug development.

She joined Amicus in 2006, with increasing operational and leadership responsibilities for the company’s highly regarded Patient & Professional Advocacy Department, a function at the heart of Amicus since its earliest days as an R&D organization. As Chief Patient Advocate, Jayne is responsible for developing and executing the global strategies that ensure patients remain at the core of all company operations, and for overseeing the relationship management strategy and execution with patient organizations and key opinion leaders. Founder of the company’s long-standing Patient Advisory Boards program, Jayne guides Amicus’ patient focus and with her team gives voice to the concerns of patients, families and caregivers regarding disease management, unmet medical need, communicating clinical trial results and access that help shape the company’s cross-functional approach to drug development and delivery. Through Public Policy activities, she helps direct Amicus’ efforts as an agent for safe, expedited change of public policies to satisfy unmet need among those living with rare diseases. The company’s Charitable Contributions Program is also under her purview.

Jayne often addresses biopharma industry conferences about Patient Advocacy and patient-focused drug development.  She serves on industry, association and nonprofit boards and committees, including: founding chair of BioNJ’s Patient Advocacy Committee; member of the Board of Trustees of the Healthcare Institute of NJ (HINJ); member of BIO’s Government Relations and Rare Disease specialty committees; director of Together Strong, a new foundation for research of Niemann-Pick Disease Type C; and co-founder and board member of the recently established Professional Patient Advocates in Life Sciences (PPALS), a nonprofit organization to advance Patient Advocacy as a profession through educational curricula, networking and a certification program.  Jayne also is part of the Corporate Alliance of Global Genes and is a former vice-chair of the Board of Directors of the National Organization for Rare Disorders (NORD).  She is the former executive director of National Tay-Sachs & Allied Diseases Association, based in Boston.

A native of Medford, Massachusetts, Jayne is a graduate of Syracuse University with a dual degree in Public Communications and English Literature and studied marketing management at Radcliffe College. She and her husband, Bruce, reside in Hightstown, NJ; they have two adult children.

Barbara Wuebbels serves as co-founder of the PPALS organization and sits on the executive board. She has more than 15 years of experience working with patients, patient organizations and clinicians in the rare disease community. Since October 2013, Barbara has served as Vice President of Patient Advocacy for Audentes Therapeutics. Prior to joining Audentes, she spent 6 years at BioMarin Pharmaceutical Inc. where she held positions of increasing responsibility in Patient Advocacy and medical affairs. This work included the creation of a global Patient Advocacy and investigator relations department. Through this new department, she linked the critical perspectives of Patient Advocates with the internal planning of clinical and commercial activities. Barbara currently serves on the board of the Battens Disease Support and Research Association.

Barbara earned a Master’s degree in Adult Health Nursing from Arizona State University, and a Bachelor of Science degree in Nursing from St. Louis University.

Meg Wuebbels Leal is the President of MWL Consulting, LLC, a political and legislative consulting services firm utilizing over 20 years of experience as a lobbyist in legislative, governmental, and public affairs representing a variety of interests at municipal, county, state and federal levels. Previously she served Senior Counsel and Local Government Relations Director for the largest public power utility in the southwest. She was the Director of Legislative Affairs for Arizona Governor Janet Napolitano and served as Assistant Counsel on the United States Senate Judiciary committee. She is a cum laude graduate of the University of Arizona James E. Rogers College of Law and has a Bachelor’s degree from Southern Methodist University in Dallas, Texas. Meg and her husband Mike, also an attorney, live in Phoenix, Arizona with their 6 year old son. Meg and her son recently co-authored and illustrated a children’s book together.