CFC International

CFC International CFC International is dedicated to the support, research and treatment of individuals living with CFC Syndrome. Most will also have a heart defect.

Our mission is to improve the quality of life for individuals with CFC syndrome and their families. Cardio Facio Cutaneous syndrome is a rare genetic condition that typically affects the heart (cardio-), facial features (facio-) and skin (cutaneous). It is seen with equal frequency in males and females and across all ethnic groups. Children with CFC syndrome may have certain features that suggest the diagnosis, such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin, and small stature.

🌟 We are thrilled to share that our Executive Director, Tuesdi Dyer, has collaborated with an incredible team of researc...
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

Webinar: Growth in CFC SyndromeTuesday, February 24, 20268 p.m. - 9:30 p.m. ETJoin us as Dr. Miller shares essential inf...
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

💙 Support Group Invitation 💙Are you a friend, family member, or caregiver of someone living with CFC syndrome—but not a ...
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 💙

🎸🎉 Exciting news, everyone! We’ve just secured our 7th artist signature on our Birchmere artist-signed guitar, and it’s ...
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

🌟 Join us for a supportive webinar featuring Dr. Heather Thompson, PhD, CCC-SLP, as she dives into speech and feeding co...
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

Join us on January 20, 2026, for an enlightening session about our Citizen Patient Registry and its innovative assistive...
01/07/2026

Join us on January 20, 2026, for an enlightening session about our Citizen Patient Registry and its innovative assistive component, the AI Advocate.

Don't miss the opportunity to hear from Citizen's Geo Beek, Certified Genetic Counselor. With his extensive experience working closely with patients diagnosed with Rasopathy conditions, he brings invaluable insights into navigating patient registries and addressing your most pressing questions.

Our Executive Director, Tuesdi Dyer, will also be present to engage with families, as we delve into how this registry can transform care and elevate research outcomes for all our families. Join us for a conversation that promises to make a meaningful impact on your journey!

Register required. Register here: https://www.cfcsyndrome.org/patient-webinars

Wishing you a beautiful holiday season and a happy new year! Our team will be working a lighter schedule until January ...
12/19/2025

Wishing you a beautiful holiday season and a happy new year!

Our team will be working a lighter schedule until January 5th, but please always feel free to contact us at info@cfcsyndrome.org

*Artwork of children and young adults with CFC syndrome.

12/03/2025

🌍✨ On this International Day of People with Disabilities, we come together to celebrate the incredible strength and resilience of individuals living with disabilities, including many of those with CFC Syndrome. Every day, people with disabilities inspire us with determination, courage, and unique perspectives.

CFC syndrome, characterized by varying degrees of developmental delays, physical disabilities, and other health challenges, showcases just how diverse and remarkable each person’s journey can be. Let's recognize the achievements and contributions of those with disabilities, who continue to break barriers.

🎉 We woke up this morning to an incredible surprise! Thanks to your generosity, yesterday, we received over $43,000 in d...
12/03/2025

🎉 We woke up this morning to an incredible surprise! Thanks to your generosity, yesterday, we received over $43,000 in donations for Giving Tuesday to support CFC International and CFC families. 💖

This overwhelming support will help provide much-needed:
- Research (including new young investigator grants),
- Medical financial assistance for families in need,
- Expert webinars,
- Support groups,
- Two CFC clinics in 2026,
- Family meetups across multiple regions,
- Updated guidelines for clinical care,
- Preparation for our 2027 conference,
- Travel stipends for families attending clinics, meetups, and our conferences.

It’s fantastic to see our community come together for the work we do!

Thank you to everyone who donated and spread the word! Together, we can transform the journey for patients and families affected by CFC syndrome! 🙌💪

🌟 We are filled with gratitude to share that we have raised $35,000 so far on Giving Tuesday for CFC International! 🎉 B...
12/02/2025

🌟 We are filled with gratitude to share that we have raised $35,000 so far on Giving Tuesday for CFC International! 🎉 Because of you, each website and social media donation has moved us closer to our mission! 💙🙏

🌟 We are beyond grateful to announce that we have raised over $24,000 halfway through Giving Tuesday for CFC Internation...
12/02/2025

🌟 We are beyond grateful to announce that we have raised over $24,000 halfway through Giving Tuesday for CFC International! 🎉 Your support and generosity are making a significant impact on our mission, and we couldn’t do it without each and every one of you. Thank you for being part of this incredible journey! 💙🙏

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3665 East Bay Drive #204/277
Lake Worth, TX
33771

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