July Town Hall
This month’s Town Hall brought our community together for a powerful and motivating conversation centered around policy and advocacy in healthcare from the perspectives of both and advocates living with EB as well as a congressional representative. This Town Hall reminded us the importance of using your voice in advocacy to help us get closer to a cure for Epidermolysis Bullosa (EB) and gave us further insight into current healthcare policy impacting the EB community.
Our speakers:
Shane DiGiovanna
At 27, Shane DiGiovanna has made the most of every single second of his life. Passionate about politics, space and science, and Star Trek, Shane became one of the first people with severe EB to live long enough and be healthy enough to go away to college and graduate. For the past five years, Shane has been battling a very aggressive form of cancer, which has severely limited his mobility, but he still faces every day as a fresh challenge to complete!
Rep. Greg Landsman
Representative Greg Landsman is a father and husband who is proud to call Southwest Ohio home. Before joining the U.S. House of Representatives in 2023, Greg served on the Cincinnati City Council for five years where he led investments in public safety and core services. Greg also led the effort to establish the City of Cincinnati’s first-ever Office of Ethics and Good Government as well as the Balanced Development Scorecard to increase trust in local government and transparency in the development process. Greg has spent his entire career advocating for children and families, especially those most marginalized.
Our speakers:
Shane DiGiovanna
At 27, Shane DiGiovanna has made the most of every single second of his life. Passionate about politics, space and science, and Star Trek, Shane became one of the first people with severe EB to live long enough and be healthy enough to go away to college and graduate. For the past five years, Shane has been battling a very aggressive form of cancer, which has severely limited his mobility, but he still faces every day as a fresh challenge to complete!
Rep. Greg Landsman
Representative Greg Landsman is a father and husband who is proud to call Southwest Ohio home. Before joining the U.S. House of Representatives in 2023, Greg served on the Cincinnati City Council for five years where he led investments in public safety and core services. Greg also led the effort to establish the City of Cincinnati’s first-ever Office of Ethics and Good Government as well as the Balanced Development Scorecard to increase trust in local government and transparency in the development process. Greg has spent his entire career advocating for children and families, especially those most marginalized.
July Town Hall Summary
Shane began the conversation by sharing his personal journey living with EB. He spoke candidly about the challenges and resilience that have shaped his story, from navigating the healthcare system to building communities of support. Shane also highlighted his deep interest in politics, science, and space, explaining how these passions connect to his advocacy for the EB community.
Through his work with institutions like the Patient Advisory Council, Cincinnati Children’s Hospital, and Rice University, Shane is helping drive policy conversations that center the rare disease experience. He closed his remarks with a moving call to action: for everyone listening to use their voice, in whatever way they can, to help bring awareness and funds for the EB community.
Greg followed by sharing his own story and professional path, explaining how his career in politics and public service led him to champion causes affecting marginalized communities. Greg emphasized that advocating for children and families — especially those most often overlooked — is not only a moral imperative, but a necessary step toward creating a more inclusive and effective healthcare system.
Shane and Greg then discussed the following questions in a Conversation on Healthcare Policy & Advocacy:
Shane also proposed an innovative idea around aggregating federal EB research funding data to help track impact and shape future priorities.
Through his work with institutions like the Patient Advisory Council, Cincinnati Children’s Hospital, and Rice University, Shane is helping drive policy conversations that center the rare disease experience. He closed his remarks with a moving call to action: for everyone listening to use their voice, in whatever way they can, to help bring awareness and funds for the EB community.
Greg followed by sharing his own story and professional path, explaining how his career in politics and public service led him to champion causes affecting marginalized communities. Greg emphasized that advocating for children and families — especially those most often overlooked — is not only a moral imperative, but a necessary step toward creating a more inclusive and effective healthcare system.
Shane and Greg then discussed the following questions in a Conversation on Healthcare Policy & Advocacy:
- The current role of Congress in addressing rare disease gaps in healthcare
- The progress and limitations of the Orphan Drug Act
- How communities like ours can gain more representation in health policy decisions
- Advice for young people with chronic or rare conditions who want to be involved in politics or advocacy
Shane also proposed an innovative idea around aggregating federal EB research funding data to help track impact and shape future priorities.
EBRP live Town Halls
Our monthly Live Town Halls help drive research and awareness with informative discussions led by trusted specialists and advocates in the EB space. Topics include current research, clinical trials, caring for loved ones with EB, and more. Town Halls are open to anyone interested in learning more about EB and the future of EB treatment and care. Check out more of our Town Halls here.
To register for our next Live Town Hall, click here.
To register for our next Live Town Hall, click here.
