Coming Together for a Cure

05/20/2026

🧭 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.

05/12/2026

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. 💜

05/06/2026

🚨 LAST CHANCE! 🚨

CTFAC has partnered with Kansas State University's NSSI Program to help rare disease families navigate their journey while giving K-State students a chance to 💪 their sales skills.

Ticket options:
🎟️ 1 for $20
🎟️ 3 for $50
No need to be present to win!

Tap the link to grab your tickets and help us spread the word!
🔗 https://bit.ly/ksu-nssi-raffle

04/18/2026

💜 Reminder 💜 Purchase your tickets for a chance to win a custom K-State golf cart!

You get a golf cart, K-State Sales Program gets merit scholarship, rare disease families get support. You can’t lose!

04/15/2026

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

04/13/2026

LINK TO PURCHASE: https://bit.ly/ksu-nssi-raffle

Imagine pulling up to tailgates this fall in a custom K-State golf cart. We can make it happen. We’re raffling off this fully customized Kansas State golf cart through the National Strategic Selling Institute’s Annual Benefit Auction, the Auction of Ages 🎸

Where your money goes:
• Merit-based scholarships for future K-State students
• Coming Together For A Cure, supporting families navigating rare disease

🎟 1 ticket – $20
🎟 3 tickets – $50
No need to be present to win.

Pickup in Manhattan, KS (or arrange transport).

You get a shot at the ultimate tailgate vehicle, students get hands-on sales experience, scholarships get funded, families get support. It’s a win-win you can’t miss out on!

03/02/2026

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.

02/21/2026

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 raffle information for funds that benefit CTFAC

02/20/2026

National Caregivers Day is a chance to recognize the people who quietly hold everything together.

To the parents, siblings, extended family, friends who feel like family, and home healthcare providers, thank you for the time, energy, and care you give every day. You step up when it’s needed, pour love into those around you, and keep showing up.

The good you put into the world is real and lasting. We couldn’t do this without you.

02/19/2026

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

02/18/2026

2025 was a big year for CTFAC. With new leadership and a growing board, the organization became stronger and more focused. We reached more families, built new partnerships, and grew support from donors who believe in our mission.

Because of this growth, CTFAC ended the year in a strong financial position and is ready to do even more in the years ahead.

For more information on organizational and financial growth metrics, review our 2025 Annual Report.

Annual report for the performance of CTFAC during the 2025 calendar year