Coming Together for a Cure

🧭 Introducing Rare Compass Forum

Navigating a rare disease diagnosis can feel like being handed a map with no legend. You're making life-altering decisions with incomplete information, in systems that weren't designed with you in mind.

Rare Compass Forum exists to change that.

As CTFAC's flagship virtual summit, we've designed a dedicated space for rare disease patients, caregivers, and advocates to connect with experts, share lived experience, and access resources that actually move the needle.

Here's what's coming:
✦ Expert-led sessions with speakers who specialize in rare disease navigation
✦ Real conversations about treatment access, funding, and advocacy
✦ A community built around people who get it

This page is just getting started so follow along. Share this with someone who needs it. And if you've ever felt lost in the rare disease space, this was built for you.

🔗 Link in our "About" section to learn more about CTFAC, Rare Compass Forum, and what's ahead.

We are beyond grateful! 🙏 A massive thank you to the K-State NSSI National Strategic Selling Institute and everyone who participated in the 14th Annual NSSI Benefit Auction. Your generosity raised $25,827.72 for Coming Together For A Cure, proof that when people come together, incredible things happen. 💜

CTFAC took some advice from the infamous Patti LaBelle and got a new attitude in the form of an updated and refreshed website!

We’re excited to showcase the new look and feel of CTFAC and continue to help those impacted by rare disease find resources and support. We hope that our community will take time to explore our new website, be curious about our programs, and continue to stay engaged as we help others along in their rare disease journey.

Find us at www.ctfac.org

Our team had the opportunity to participate in BioNexus KC's 2026 Rare Disease Day Conference, where we came together with like-minded individuals to focus on rare disease and explore how to collaborate more effectively to achieve improved health outcomes for those affected by them.

Thank you to Dennis Ridenour for your commitment to strengthening the conversation about rare diseases today and every day, so that we can continue to show up for those who need community and support.

We are thrilled to partner with K-State Sales Program for another year to help raise funds for merit scholarships and benefit the mission of CTFAC!

Every ticket purchased helps provide resources, support, and community for those impacted by Duchenne muscular dystrophy and other rare diseases.

..And puts you in the running for a K-State themed golf cart, perfect for the links (or for tailgating at the Bill)!

Click below to purchase your tickets and best of luck to all participants!

Go Cats 💜

KSU NSSI + CTFAC Raffle KSU NSSI raffle information for funds that benefit CTFAC

February is Heart Health Awareness Month, so we took a look at how DMD and heart disease are connected.

In Duchenne muscular dystrophy (DMD), the heart is literally another muscle that weakens over time. But because overall treatment has vastly improved for DMD over the last couple of decades, the heart has become a major focus area for both doctors and researchers. Dr. Chet Villa, MD of Cincinnati’s Children’s Hospital, says, “The goal is to slow the deterioration of the heart muscle so that we might be able to slow down the development of heart failure.”


Source article: https://bit.ly/4aG3D7w