Tony Castaldo, US Hereditary Angioedema Association
Tony is a co-founder of HAEi and has been President since the organization’s inception. He also serves as the President of the US HAE Association and on the Board of Directors of the National Organization for Rare Diseases. He dedicated much of his life to driving improvement in HAE care and remains highly motivated by the challenge of global HAE advocacy.
Katie Kroner, Pulmonary Hypertension Association
As PHA’s Senior Director of Advocacy and Treatment Access, Katie advocates on behalf of the PH community with federal policy makers, coordinates PHA’s grassroots advocacy network, and works to ensure that individuals living with PH have access to the specific PH therapies prescribed by their physician. She is the first point of contact for PH community members with insurance challenges and for anyone interested in fighting back through advocacy.
Randall Odebralski, Good Days
Mr. Odebralski joins Good Days after serving as General Manager for Walgreens Specialty Pharmacies in Texas. In addition to his previous roles in the specialty pharmacy space, he has served in other leadership positions for Walgreens in multiple pharmacy business units throughout the United States for more than 19 years. Through the course of his career, Mr. Odebralski has gained unique qualifications and perspective in patient care while overseeing pharmaceutical operations concerning patients with rare and chronic diseases, in need of long-term or hospice care, in home care or with home infusion therapies, and with mail service pharmacy needs.
Jonathan James, Hope For Hemophilia
Jonathan James is pastor, CEO, dad, worship leader, and husband who has a passion for helping the hurting. As co-founder of Grace Journey Church, Jonathan uses his decade-long experience of pastoring as a way to meet the needs of those around him. He also carries a passion to pastor those who are pastoring others. As a person who has an incurable illness, he has suffered through the ups and downs of balancing life, ministry, parenting, and finances. Jonathan has a background in helping individuals with their financial planning due to his experience as a financial advisor for over 10 years. He uses his background in both finance and his personal experience with hemophilia to help families in crisis. This experience lead to him founding the national organization, Hope Charities, in 2009. Jonathan has substantial experience as a keynote and public speaker and continues to be a role model to many who are growing up with the challenges of hemophilia.
Jack Johnson, Fabry Support & Information Group
Jack is a founding member and Executive Director of the Fabry Support & Information Group (FSIG) in the United States, and is also a founding member and Vice President and Board Member of the Fabry International Network (FIN). It is the mission of the Fabry Support & Information Group to provide the Fabry community and the general public with information, advocacy, education, and compassionate support to improve the quality of life and the quality of care for Fabry patients and family members. Jack’s active role in the Fabry community on a national and international level has helped not only increase awareness for Fabry disease, but also has directly benefited numerous people who have been diagnosed with Fabry disease. Jack is able to bring his own experiences as a Fabry patient to his international advocacy work. Jack is a tireless advocate, and continues to champion patient meetings, fundraisers, and awareness activities for people affected by Fabry disease.
Megan Glynn, American Liver Foundation
An experienced health professional with a demonstrated history of working in the non-profit organization industry. Skilled in Nonprofit Organizations, Health Promotion, Teamwork, Leadership, and Health Advocacy while working to improve the lives of others by influencing policy. Professional with a Masters of Public Health focused on Health Education and Promotion from The Northwest Ohio Consortium for Public Health (The University of Toledo/Bowling Green State University).
Member at Large
James Romano, Patient Services Inc.
James Romano is currently the Director of Government Relations and Advocacy at Patient Services Incorporated (PSI). He has served in this capacity since 2005. James began his career in patient advocacy at the age of 19. As a freshman in college, he lobbied for the passage of the Ricky Ray Hemophilia Relief Fund Act (Public Law 105-369) on behalf of the Hemophilia Community. James has five members of his family with hemophilia and is the fourth generation to advocate on behalf of the rare disease and plasma community.
Member at Large
Diana Nieves, The Life Raft Group
Experienced Director with a demonstrated history of working in the non profit industry. Skilled in Nonprofit Organizations, Events and People Management, Fundraising, Project Management, Coaching and Holistic Health. Strong operations professional with a Master's Degree in Public Administration.
Member at Large
Chelsey Fix, GBS|CIDP Foundation International
Chelsey comes to GBS-CIDP Foundation International as the Advocacy Manager. She previously held the title of Associate Director, Industry and Government Relations at another rare disease patient advocacy organization. Chelsey brings 4 ½ years of experience in working with rare disease patient communities to advocate to the federal and state government for research funding and fair health care regulations. Chelsey holds an MPH degree from Temple University, and is passionate about the relationship between research, policy/laws, and the community. In her spare time, Chelsey loves reading mystery/thriller novels and walking her American Bulldog, Moose.