❤️ I HAVE SOME EXCITING NEWS TO SHARE! I am incredibly honored and excited to announce that I've been selected to speak in person at the FDA's Rare Disease Framework Public Meeting on October 28th in Silver Spring, Maryland! This meeting is especially meaningful because it focuses on the FDA's new initiative and recently released white paper, A New Framework for Rare Disease Review. For someone who has spent so many years advocating for the Huntington's disease community, this opportunity means more to me than I can adequately put into words. I'm not just an advocate. I'm gene-positive, someone living with the reality of a progressive, rare brain disease. I've watched this disease take so much from people I love, and I know firsthand what is at stake when we talk about treatment development, regulatory decisions, and the time patients have left. I've spent nearly two decades fighting for a seat at the table. On October 28th, I'll have the privilege of using that seat to help shape a future where the patient voice is not an afterthought, but a foundation of the process. And that means everything to me. ❤️ The FDA's new Rare Disease Framework Initiative represents an opportunity to rethink how treatments for rare diseases are developed and reviewed, recognizing that rare diseases present unique challenges that traditional approaches don't always adequately address. It's an opportunity to discuss what evidence is realistically attainable, how we can improve consistency and predictability in regulatory decisions, and how patients can have a meaningful role throughout the process. But here's the part I really want everyone to hear: 📣 YOU HAVE A SEAT AT THIS TABLE, TOO! The FDA is inviting public comments on this initiative, and this is an opportunity for patients, caregivers, families, advocates, researchers, and everyone impacted by rare diseases to provide input. You don't need a medical degree. You don't need to understand every detail of regulatory science. 💪Your lived experience IS expertise. And your voice deserves to be heard. 💙 📣 HOW TO GET INVOLVED: 📝 Submit a public comment: regulations.gov/docket/FDA-2… Docket #: FDA-2026-N-12214 📅 Deadline to submit comments: December 11, 2026 📖 Read the FDA's new white paper and learn about the initiative: fda.gov/industry/fda-rare-di… 💻 Learn about the October 28th public meeting and how to attend virtually: fda.gov/news-events/fda-meet… I'm excited. I'm humbled. And I'm incredibly grateful for this opportunity. But more than anything, I'm hopeful about what we can accomplish when patients are genuinely included in shaping the systems that determine our futures. We have an opportunity to make a difference. Let's not waste it. Because for those of us living with progressive rare diseases, every day matters. Disease progression can cause irreversible damage. And what we stand to lose isn't just time - it's our independence, our abilities, precious moments with our families, and the futures we're fighting so hard to protect. ❤️ Time Matters. And so do our voices. #RareDisease #HuntingtonsDisease #FDA #PatientAdvocacy #PatientVoice #TimeMatters #RareDiseaseResearch #RareDiseaseFramework