CFC International

04/18/2026

🎸✨ NEW DRAWING DATE! MAY 31st! ✨🎸

We’re excited to announce that the date for the drawing of our generously donated **SIGNED GUITAR** has been changed to **May 31st**! That gives you just a few more weeks to enter and support the life-changing research at CFC International, all while having the chance to take home an incredible piece of music history!

Purchase your opportunity through the link below or scan the QR code. Remember, you don’t need to be present to win!

With you, we can create a meaningful impact on the lives of individuals affected by CFC syndrome and their families! 💙🎶
https://app.etapestry.com/onlineforms/CFCInternational/BirchmereGuitar.html

04/02/2026

🎸✨ The countdown is on! ✨🎸

We’re just a few short weeks (23 days) away from announcing the lucky winner of our generously donated **SIGNED GUITAR**! This is your chance to support the life-changing research at CFC International while also potentially taking home an incredible piece of music history!

A huge THANK YOU to our amazing sponsors, **The Birchmere in Alexandria, VA**, and the **Milner Family** for making this opportunity possible. Your generosity truly makes a difference!

Don’t miss out – there’s still time to grab your chance to win! Currently signed by Lyle Lovett, Buddy Guy, Steve Vai, Ritchie Blackmore, Richard Thompson, Peter White, Ricky Skaggs, and we are still adding more! Purchase your opportunity through the link below or scan the QR code. Remember, you don’t need to be present to win!

With you, we can create a meaningful impact on the lives of individuals affected by CFC syndrome and their families! 💙🎶

https://app.etapestry.com/onlineforms/CFCInternational/BirchmereGuitar.html?fbclid=IwY2xjawQ7bHBleHRuA2FlbQIxMABicmlkETFTQnRuUjJGbmREblRNUWlPc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHnZ8wR8Z3l7rdp609GrGAnf5v36OUJFR2NiMuPanYSS8BUVP4CNNbVNgzg9D_aem_VBD-3683uEEV2CgwqnhA1g

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 💙