This week’s Keynote is a personal one for me. My guest is Meghan Buzby from the Association for Frontotemporal Degeneration (AFTD), and our conversation centers on advocacy, volunteer engagement, and the challenge of building community around a devastating disease that many people still know very little about.
My mom passed away from FTD in 2012 after a long battle with the disease, and listening to Meghan describe the support and advocacy infrastructure AFTD has built made me reflect on how valuable that type of community would have been for my family during those years.
(Clip: Ryan & Meghan on working with volunteers)
Watch on (32 mins) or enjoy the Full-Length version (54 mins) on YouTube
One of the most interesting parts of the conversation is how AFTD approaches engagement as a national organization without local chapter infrastructure. Their model is highly digital, highly flexible, and built around meeting volunteers where they are emotionally and practically. Because caregiving journeys are unpredictable and exhausting, volunteer engagement cannot be rigid. Meghan shares how their team creates opportunities ranging from lightweight digital advocacy to larger ambassador and awareness roles, all designed to help people contribute in ways that fit their lives.
For those of us working in advancement and higher education, there are a surprising number of takeaways in this conversation. We talk often about shared experience, volunteer pipelines, advocacy, and community building. AFTD approaches those same ideas from an entirely different emotional starting point, but many of the lessons still apply. The episode is a reminder that engagement is ultimately about helping people feel connected to something larger than themselves, especially during the moments when connection matters most.
