In this RxToolKit article, Infusion Access Foundation’s (IAF) Maggie Lynch shares the details and mission of IAF’s Champions’ Weekend event. From what the weekend entails to how other patients and individuals can get involved, this latest blog covers the ins and outs of one of IAF’s most impactful initiatives.
Who We Are: The Infusion Access Foundation
At the Infusion Access Foundation, we believe that every patient deserves timely and affordable access to the treatments they need. Our mission is to empower patients through advocacy, education, and community-building, ensuring that those who rely on infusion and injectable therapies are heard in the fight for better healthcare policies. We work directly with patients, healthcare providers, and policymakers to address barriers like step therapy, non-medical switching, and pharmacy benefit managers (PBMs), advocating for a system that puts patients first.
What is Champions’ Weekend?
As the Infusion Access Foundation continues its work to improve access to care for infusion patients, one of our most impactful initiatives is Champions’ Weekend. This annual advocacy retreat brings together a select group of patients from across the country and across disease states to gain the skills, confidence, and connections needed to drive meaningful change in the healthcare system.
This past December, we hosted our third annual Champions’ Weekend, welcoming nine patient advocates to Lakeway, Texas, for an immersive weekend focused on storytelling, policy education, and community-building. These individuals represented a diverse range of disease states, including rheumatoid arthritis, lupus, thyroid eye disease, and other rare conditions. Each person brought a unique perspective, yet they all shared one common goal: to equip themselves with the tools needed to advocate for themselves and others while fostering a strong network of peers who share similar experiences.
Transforming Advocacy Through Storytelling
One of the most powerful aspects of Champions’ Weekend is the professional filming of each participant’s personal health journey. These videos serve as critical advocacy tools, helping to educate policymakers, raise awareness, and drive legislative action. By putting a human face to the policies that impact patients, these stories play a vital role in advancing key issues such as step therapy reform, non-medical switching protections, and pharmacy benefit manager (PBM) transparency and accountability.
“I was diagnosed with a rare, incurable disease in 2023, and over the last two years, taking care of my health has become a full-time job. It also catapulted me into an advocacy role—one I had no formal training for. Champions’ Weekend changed that. It gave me the knowledge, confidence, and community I needed to step into this work, while also educating me on critical legislation that will impact the rare disease community for years to come. I left feeling empowered, not just to fight for my own care, but to be a voice for others navigating the same challenges.” — Lindsay Guentzel, 2024 Champions’ Weekend Attendee
During the weekend, participants engaged in hands-on training sessions led by the Infusion Access Foundation’s advocacy team, including Kindyl Boyer, Director of Advocacy, and Sam Miller, Advocacy Associate. These sessions covered the most pressing policy challenges facing infusion patients, along with strategies for effectively sharing their stories with lawmakers and the broader community.
Building a Stronger Advocacy Network
Beyond policy discussions and training, Champions’ Weekend fosters a sense of community among participants. Many attendees had never met another person with their condition in real life, making this event an opportunity to build lasting relationships and a support system that extends beyond the weekend.
Advocacy can often feel like an uphill battle, but when patients come together, they realize they are not alone in their fight for access to treatment. Champions’ Weekend not only empowers individuals to take action but also reinforces that real change happens when we work together.
“Champions’ Weekend was nothing short of life-changing for me. It was more than just an event, it was a powerful reminder of why advocacy matters. In an intimate gathering of passionate advocates, we came together, not just to learn, but to ignite change with compassion and purpose. The connections I made were deeper than friendship, they were bonds forged through shared experiences, understanding, and a relentless drive to be seen, heard, and valued. As I left Champions’ Weekend, my heart was and continues to be full, knowing I’m part of a movement that is making a real difference in the world.” — Racquel H. Dozier, Lupus Advocate and Founder of Lupus In Color, 2024 Champions’ Weekend Attendee
The Lasting Impact of Champions’ Weekend
The work of Champions’ Weekend does not stop when the event ends. The skills and experiences gained during the retreat directly translate into real-world advocacy efforts.
Personal Empowerment and Advocacy Training
Participants gain the confidence and skills to advocate for themselves and others by writing letters, providing testimony, and building relationships with lawmakers. These tools empower them to become active voices in the fight for better healthcare policies.
“The patients who come to Champions’ Weekend are already experts in their own experiences. We are simply giving them the tools to turn their stories into action. This retreat not only equips participants with the skills to write letters and provide testimony, but it also gives them the confidence to sit across from a lawmaker and make their voice heard in a way that drives meaningful policy reform.” — Kindyl Boyer, Director of Advocacy, Infusion Access Foundation
Community Education
Champions use their training to educate others in their disease communities, ensuring more patients understand their rights and how to navigate barriers to treatment.
Christine G., Executive Director and CEO of the TED Community Organization, attended Champions’ Weekend in 2023 and brought the skills she gained back to her work supporting patients with Thyroid Eye Disease (TED). By sharing the tools she gained at Champions Weekend, Christine has helped empower more TED patients to advocate for themselves and push for policies that improve access to care.
Continued Advocacy Efforts
Several participants join the Infusion Access Foundation for Hill Day, where they take their advocacy efforts directly to Capitol Hill. There, they meet with lawmakers to push for policy changes that protect and improve patient access to care.
Looking Ahead: How to Get Involved
As we prepare for Champions’ Weekend 2025, we are looking for more patients who want to make a difference in the healthcare system. Applications will open later this year, and we encourage those interested to stay connected through our newsletter and social media channels for updates.
For organizations looking to support this initiative, sponsorship opportunities are available to help provide training, accommodations, and resources for patient advocates. Your support ensures that more patients have the opportunity to become effective advocates for their communities.
Why It Matters
The impact of Champions’ Weekend extends far beyond a single weekend. It helps shape stronger, more informed advocates who will continue to fight for patient access to treatment. These efforts contribute to broader policy changes that benefit not just those in attendance but the entire infusion patient community.
To learn more about Champions’ Weekend and see the impact of patient storytelling in action, visit our YouTube channel: Infusion Access Foundation on YouTube
Interested in getting involved? Contact Maggie Lynch, Project and Fundraising Manager, at maggie.lynch@infusionaccessfoundation.org
