Empowering Voices. Inspiring Action. Elevating Patient-Centered Work.
On December 5th -6th, 2025 members of the A1F Fred C. Walsh Speaker Bureau joined in Charleston, South Carolina for a two-day training session. Alphas from around the country came together to share their Alpha-1 journeys, to be a voice and a representative for the Alpha-1 community. At the informative training, speakers learned how to share their story with clarity and impact in a way that will resonate, educate, and inspire others. During this coaching session, each speaker was given the opportunity to publicly share their story and worked on fine-tuning and tailor messaging for future live speaking engagements.
This incredible group of volunteers from all over the United States represents all segments of the Alpha-1 community including lung, liver, Alpha-1 kids, caregivers and transplant recipients. They will share their insights and experiences throughout the year with a diverse audience including:
- Patients, caregivers and families at community events, educational sessions, and support groups who need encouragement and connection.
- Medical professionals at conferences, hospital training, and grand rounds who can learn firsthand what truly matters to the people they treat.
- Industry leaders and researchers at meetings, advisory boards, and innovation summits that are seeking to understand patient needs as they develop treatments and therapies and guide them to prioritize patient-centric solutions.
- Government officials and agencies during policy discussions and awareness initiatives that are shaping policies that impact equity, quality and access to better care.
- At plasma and collection center events, highlighting the lifesaving donation for Alpha-1 patients whose therapeutic treatments depend on it.
Their presence in these spaces ensures that the patient’s perspective is not only heard but prioritized with the power to inspire hope, drive understanding, and spark change across the healthcare ecosystem. The patient’s voice represents the lived experience that no statistic or clinical study can fully capture—and that makes it priceless. This group of incredible patient speakers brings humanity to healthcare and ensures that decisions, treatments, and innovations are guided by those who experience them. The goal is to shape perspectives, influence decisions, and be a beacon of advocacy and education.
The A1F Fred C. Walsh Speaker Bureau is a new A1F program that serves to empower Alphas to be the voice of the Alpha-1 community. Named for the late Fred Walsh, an active Alpha-1 patient voice on A1F’s Board of Directors as the Vice Chair and an AlphaNet coordinator, Fred served as a key figure in the Alpha-1 community. Since the establishment of both A1F and AlphaNet in 1995 by his twin brother John W. Walsh, Susan Stanley and Sandy Lindsey, Fred dedicated his life to supporting and educating his fellow Alphas. His belief in patient empowerment resonated deeply, and he championed the idea that individuals must take an active role in their health and advocate for themselves. Fred remained hopeful for the continued growth and success of the Alpha-1 community, envisioning it as a beacon of hope for patients everywhere. His legacy, rooted in compassion, advocacy, and community, will undoubtedly inspire future generations of Alphas to connect, support and strive for a brighter future.
To learn more about the Fred C. Walsh Speaker Bureau, contact Chelsea Boring at cboring@alpha1.org or Angela McBride at amcbride@alpha1.org
