CFC International

03/31/2026

Dr. Hux would like to thank everyone who participated in Phase 1 of the Caregiver Well-Being study. Your stories helped shape the guidelines for practice she published for occupational therapists working with families with complex needs.

Here are her two publications: https://scholarworks.wmich.edu/ojot/vol13/iss4/6/ and https://scholarworks.wmich.edu/ojot/vol13/iss4/7/

Phase 1 of the study also focused on the challenges, joys, and meaning found in families raising individuals with CFC. One more publication is currently under review.

Phase 2 of the study will measure the strength of the relationship among the challenges caregivers report and their overall health and well-being. This will help healthcare providers identify caregivers who are at risk for decline in health status (physical and mental) and will help secure additional supports for those who need it most.

Enrollment is now open. Please scan the QR code to send an email letting her know you want to participate.

02/28/2026

Grateful to be among these amazing organizations recognized with a grant from Amgen for patient advocacy!

02/28/2026

🌍✨ Cardio-Facio-Cutaneous Syndrome (CFC syndrome) is a rare genetic disorder, with fewer than 2,000 known patients worldwide. However, the challenges faced by those diagnosed with CFC are far from uncommon — highlighting the extraordinary strength and resilience of the human spirit.

Individuals living with CFC often contend with a variety of serious health issues, including heart conditions like cardiomyopathy, which can significantly impact their quality of life. In addition, many experience seizures that may not respond to typical treatment, sleep disorders, and growth delays, as well as feeding and gastrointestinal complications that can affect overall health and development.

We must raise awareness and deepen our understanding of CFC syndrome, ensuring that patients receive the support, resources, and recognition they deserve. Let’s unite to amplify their voices and honor their journeys. 💙

02/28/2026

It's Rare Disease Day! We are always so proud of what this day brings... more than 7,000 rare diseases and millions of patients standing together to bring awareness, hope, and understanding of all rare patients! Alone we are rare, but together we so strong!

Share why this day is important to YOU, below!

🌍💜 Today we stand with the 300 million people living with a rare disease. We are united with their families, friends, caregivers, advocates, and the medical professionals, researchers and organisations that working tirelessly to build a more equitable future for our community.

Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

Thank you to everyone who’s taken part, whether you’ve lit up your home, shared your story, joined an event, or supported someone you love. By standing together we’re proving that our community is strong, united, and truly more than anyone can imagine. ✨

👉 Learn more and discover ways you can still get involved: https://go.rarediseaseday.org/NEWS

02/28/2026

🎉 Exciting News this Rare Disease Day! 🎉 We are thrilled to announce that the 2027 CFC International Family Medical Conference will be in Indianapolis, Indiana in July 2027! Next year, we’re uniting our event with the Costello Family Conference and the Rasopathy Network's research symposium (July 17-19). 📅✨

This collaboration opens doors to more medical and research experts, greater education, and extensive research opportunities for our families - empowering our community with more knowledge and insight on the future of treatment in CFC syndrome.

More details will be coming soon. Hotel registration opens this summer and event registration opens on January 1, 2027. Save the date and prepare for an inspiring and transformative event! 💪💚

02/28/2026

🌍✨ Today is Rare Disease Day, a powerful reminder to raise awareness for those living with rare conditions! CFC Syndrome (Cardiofaciocutaneous Syndrome) affects many aspects of life for individuals and their families. Understanding CFC Syndrome is essential—it enhances care, support, and fosters a sense of community.

By spreading awareness, we empower ourselves to recognize the challenges faced by those with CFC, inspiring empathy, research, and potential treatment options. Let’s unite to uplift those with rare diseases — share your story, educate others, and advocate for a brighter future! 💙

02/26/2026

Proud to be featured by Amgen and be a recipient of their RAREis Grant!

02/13/2026

🌟 We are thrilled to share that our Executive Director, Tuesdi Dyer, has collaborated with an incredible team of researchers, leaders, and clinicians from the Rare Epilepsy Network (REN) on a newly published article! 📚

The article, titled "Unlocking the Potential of Multidisciplinary Clinics to Improve Care for Medically Complex Rare Epilepsies," is now available in Frontiers in Neurology (DOI: https://lnkd.in/emsnaHdb).

This important work highlights our long-held belief about multidisciplinary clinics in the rare disorders community: when caregivers, clinicians, researchers, and institutions unite across disciplines, we can enhance outcomes for everyone involved.

We invite you to read the article and explore the potential of collaborative care! 💪✨
Tuesdi Dyer
📖 Read here: https://lnkd.in/emsnaHdb

https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2026.1619219/full

02/09/2026

Webinar: Growth in CFC Syndrome
Tuesday, February 24, 2026
8 p.m. - 9:30 p.m. ET

Join us as Dr. Miller shares essential information on growth expectations in CFC syndrome, growth tracking, understanding of growth hormone use, and answers your questions.

You will receive the Zoom link after registration.
Register here:
https://www.cfcsyndrome.org/patient-webinars

02/03/2026

💙 Support Group Invitation 💙

Are you a friend, family member, or caregiver of someone living with CFC syndrome—but not a parent? We’d love for you to join us for a special support group just for you.

📅 Tuesday, February 3
🕖 7:00 p.m. EST
📍 Via Zoom - no registration required!

This group is a safe, supportive space to ask questions, learn more about CFC syndrome, and better understand how to support your loved one. Whether you’re new to CFC or simply looking to connect and learn, you are welcome here.

👉 Join us via Zoom using the link in the comments.

Please feel free to share this post with others who may benefit. We look forward to seeing you there 💙

01/13/2026

🎸🎉 Exciting news, everyone! We’ve just secured our 7th artist signature on our Birchmere artist-signed guitar, and it’s none other than the incredible Ricky Skaggs! 🙌✨

That’s right—our guitar now boasts signatures from an amazing lineup including Lyle Lovett, Buddy Guy, Steve Vai, Ritchie Blackmore, Richard Thompson, Peter White, and of course, Ricky Skaggs! 🤩

This guitar is more than just a collector’s item; it’s a chance to make a difference! Every entry helps raise funds and awareness for CFC syndrome research and CFC International.

🤳 Scan the QR code link to secure your chance to win, and stay tuned—more exciting renowned guitarist signatures are on the way! Drawing is on April 25th at the legendary Birchmere Music Hall in Alexandria, Virginia. But, don't worry, you do not need to be present to win. Scan the QR code or visit the link below. 🎶❤️
https://app.etapestry.com/onlineforms/CFCInternational/BirchmereGuitar.html

01/09/2026

🌟 Join us for a supportive webinar featuring Dr. Heather Thompson, PhD, CCC-SLP, as she dives into speech and feeding concerns related to CFC syndrome. 🗣️✨

Dr. Thompson is a licensed Speech-Language Pathologist and the Department Chair of Communication Sciences and Disorders at California State University, Sacramento. With her extensive background, including her role in the Northern California LEND program at UC Davis MIND Institute, she brings a wealth of knowledge to the table.

This session promises to be insightful for families, focusing on practical solutions and support for those navigating the challenges of speech-language development in children with CFC syndrome.

📅 Don’t miss it! Register at the link! Together, we can advance understanding of CFC syndrome!
*Sessions recorded*
https://www.cfcsyndrome.org/patient-webinars