Speakers
Lisa Butler
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 GBS. Ten years later, Lisa’s son, Stuart, was diagnosed with GBS. Following Stuart’s recovery, Lisa became the parent Liaison for the Foundation for “parents with children diagnosed with GBS”.
Lisa maintains a BA in English in addition to having a ten-year career in marketing and event planning for nonprofits. Prior to assuming her position as Executive Director, in 2015, Lisa managed the Foundation’s marketing and development programs. She was recently recognized by Patient Services, Inc. (PSI) with the 2016 Extraordinary Support Award.
Lisa recently joined the Board of Directors for the National Health Council and is a member of the Finance Committee.
Lisa, and her husband Tom – a mergers and acquisitions specialist – have three sons. They most enjoy spending time visiting their sons in Boston, Colorado and at
Bucknell University. Lisa enjoys yoga, reading, and spending time outdoors, walking trails and beaches.
Donna R. Cryer, JD
Donna R. Cryer, JD is Founder, President and Chief Executive Officer of Global Liver Institute, the only patient-driven liver health nonprofit operating across the US, EU, and UK. GLI convenes the NASH, Liver Cancer and Pediatric and Rare Liver Disease Councils, as well as the Liver Action Network, collectively more than 200 organizations.
Mrs. Cryer has channeled her personal experience as a patient with inflammatory bowel disease and a 27-year liver transplant recipient into professional advocacy across a career in law, policy, consulting, public relations, clinical trial recruitment, and nonprofit management. She is the recipient of the 2021 Global Genes RARE Champions of Hope Founder’s Award and the 2021 AASLD Distinguished Advocacy Service Award and an elevated performance for the entire system, benefiting all patients.
Mrs. Cryer was proud to serve as a member of the White House Task Force on e-health Equity in 2013. As part of the task force, she worked with a summit of experts on health disparities and health information technology to establish a framework to
ensure that underserved populations benefit from advances in health technologies.
Mrs. Cryer received an undergraduate degree from Harvard and a Juris Doctorate from the Georgetown University Law Center.
Pat Furlong
Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.
In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure. Today, Pat continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world. Duchenne is the most common fatal, genetic childhood disorder, which affects approximately 1 out of every 4,600 boys each year worldwide. It currently has no cure.
Pat graduated from Mt. St. Joseph College in Cincinnati, Ohio with a BSN in Nursing. She attended Graduate School at Ohio State University. While attending Ohio State, Pat spent most of her time in the Medical Intensive Care Unit. After marrying Dr. Tom Furlong, Pat ran the Renal Dialysis Unit and Patient Education Center at Akron
General Hospital. With four children, Pat continued her career on a part-time basis, teaching patient education classes at Middletown Regional Hospital.
Pat has two daughters, and her perseverance is in honor of her two sons, Christopher and Patrick, who continue to motivate her efforts.
Celina Gorre
Celina Gorre is the CEO of WomenHeart: The National Coalition for Women with Heart Disease, based in Washington, D.C. Formerly, she was the founding ED of the Global Alliance for Chronic Diseases, based at the Welcome Trust in London, UK. From 2009-2011, Gorre was the founding managing director of the Foundation for the UN Global Compact. From 2007-2009, she was in the field with UNFPA and UNICEF in Angola as a senior HIV/AIDS advisor.
Gorre has had extensive experience at the intersection of corporate responsibility and global health, developing health and social programs for multinational companies. She was the technical manager for the Global Business Coalition on HIV/AIDS, Tuberculosis and Malaria from 2005-2007. She has also held in-house corporate responsibility positions, leading global training for Gap Inc.’s social responsibility department and conducting factory audits for Mattel Inc.
Gorre earned an MPH from UCLA, and an MPA from the Harvard Kennedy School.
Julia Jenkins
Julia Jenkins served as the Director of Public & Government Relations when the EveryLife Foundation for Rare Diseases was founded in 2009. In 2013, Ms. Jenkins became the Executive Director, a position she still holds. Her background in grassroots organizing, and legislative advocacy helped unite more than 180 patient organizations under the CureTheProcess Campaign. She worked to ensure ULTRA/FAST was included in the 2012 FDA Safety and Innovation Act (FDASIA). Julia initiated RDLA to serve as a communication platform for rare disease stakeholders to work on legislative issues and to help elevate the voice of rare disease patients on Capitol Hill.
Prior to working at the EveryLife Foundation for Rare Diseases, she worked as a Political Communications Consultant with the Lew Edwards Group, creating strategic plans to organize communities to support local funding measures. Julia was Legislative Director and registered California State lobbyist for Public Employees Union Local #1. She led efforts for the San Francisco Democratic Party, helping to defeat the anti-labor propositions in the 2005 Special Election and worked for House Minority Leader Nancy Pelosi. Prior to working in politics, she was a fundraiser for the Muscular Dystrophy Association.
Randy Rutta
Rutta joined the National Health Council (NHC) in February 2021 as the organization’s Chief Executive Officer. As CEO, Rutta leads 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 the NHC staff to implement a Board-driven strategic plan and public policy and advocacy efforts.
Prior to joining the NHC, Rutta was the President & CEO of the American Autoimmune Related Disease Association (AARDA), a national organization dedicated to addressing the problem of autoimmunity, the major cause of more than 100 serious chronic diseases. 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 & CEO, he served as AARDA’s Federal Policy Consultant since March 2018.
Rutta holds a Master of Arts in Politics, focusing on international health policy, from Catholic University of America in Washington, DC, and a Bachelor of Arts in Sociology from the University of Minnesota in Minneapolis.
Cyndi Zagieboylo
Cyndi Zagieboylo became president and CEO of the National MS Society in 2011. Starting her career with the Society in 1985, she considers the mission to be her life’s work: We will cure MS while empowering people affected by MS to live their best lives.
Cyndi is a founding member and executive committee chair of the International Progressive MS Alliance launched in 2013 to expedite the development of therapies for progressive MS. She also serves on the MS International Federation Board of Trustees.
She is passionate about building the MS movement, amplifying the voices of people affected by MS to influence lawmakers, and ensuring people know that the National MS Society is a lifelong partner in their MS journeys.
Cyndi received her bachelor’s degree in rehabilitation counseling and psychology from Springfield College and master’s degree in social psychology from the University of Connecticut.