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.

🎉 Just TWO days  left to grab your tickets online for a chance to win the amazing autographed guitar from the Birchmere ...
05/28/2026

🎉 Just TWO days left to grab your tickets online for a chance to win the amazing autographed guitar from the Birchmere Music Hall! 🎸

Did you know this guitar has already helped raise over $8,000 for CFC International? Let’s get to $10,000!

(Online opportunities close May 30, 2026 at 11:59 p.m. EDT. Drawing held on May 31, 2026 at the Birchmere Music Hall. Do not need to be present to win.)

💖 Don’t miss out on this incredible opportunity—secure your chance to win today! ⏳✨

🌟 Rare does not equal simple. In fact, it is just the opposite. Families navigating CFC syndrome face intricate medical ...
05/26/2026

🌟 Rare does not equal simple. In fact, it is just the opposite. Families navigating CFC syndrome face intricate medical care, treatment challenges, and daily caregiving—all in pursuit of a joyful life for their child. 💖

What you may not see are the countless hours of coordination, intense decision-making, financial commitment, and vigilance these families invest daily to ensure their child survives. For some of our families, their children are committing to never-before-used treatments for conditions. The decision to try a new therapy requires days of appointments, follow-ups, reporting, financial challenges, and a lot of hope. Behind every CFC syndrome diagnosis is a family showing incredible love, resilience, and determination.

🤝✨

05/22/2026

JUST 8 DAYS LEFT for your chance to WIN the Birchmere Music Hall AUTOGRAPHED guitar!

Purchase your tickets today and support the amazing work of CFC International!
Use the QR code, or link below.
https://app.etapestry.com/onlineforms/CFCInternational/BirchmereGuitar.html?fbclid=IwY2xjawR0ICJleHRuA2FlbQIxMABicmlkETFhM0NUV1lETzJDVVo2RVA3c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHvkeyfu8cbfOizVKp2-o9rWgM1uPpzBHFOZEHjFQgSFwr_Wkk-HwIV2kZXcy_aem_YWdncwAbJPq7pLuZ96XHNbHemB_G&brid=YWdncwGGCfE3U0joxvr09AwsBtqy

❌ MYTH: Cardio-Facio-Cutaneous (CFC) syndrome, as suggested by its name, primarily affects facial appearance, leads to s...
05/20/2026

❌ MYTH: Cardio-Facio-Cutaneous (CFC) syndrome, as suggested by its name, primarily affects facial appearance, leads to skin disorders, and results in specific heart conditions such as hypertrophic cardiomyopathy, atrial septal defect, and pulmonary stenosis.

✅ FACT: CFC syndrome is a complex and rare genetic condition caused by mutations in certain genes, which can have wide-ranging effects on multiple body systems. Beyond distinct facial characteristics and skin conditions, individuals with CFC syndrome may experience neurological issues, including epilepsy, cerebral palsy, developmental delays, or intellectual disabilities. It can also impact growth, leading to short stature and feeding difficulties. Mobility can be affected due to low or overdeveloped muscle tone and joint issues. Furthermore, while cardiac complications are a serious concern and often the first sign of the condition, the syndrome may also affect other organs and systems, such as the GI tract and kidneys. All of this underscores the need for comprehensive lifelong medical management and support for affected individuals.

🎸✨ SPREAD THE WORD! Just TWO more weeks until we announce the lucky winner of the autographed guitar donated by the Birc...
05/16/2026

🎸✨ SPREAD THE WORD! Just TWO more weeks until we announce the lucky winner of the autographed guitar donated by the Birchmere Music Hall and Milner family! 🎉🎶 Don't miss your chance to enter! Purchase opportunities are available until May 30th, and we'll reveal the winner at the drawing on May 31st. Every entry supports CFC International, so let's make a difference together! ❤️ Get your chance to own this incredible piece of music history and help a great cause! Good luck! 🤞

🌟 If you have not visited our website recently, now is the perfect time to do so!  Did you know that more than 1,000 peo...
05/15/2026

🌟 If you have not visited our website recently, now is the perfect time to do so! Did you know that more than 1,000 people visit our website each month and more than 90% of those are first time visitors?

Our patient families have shared with us - in our recent family survey - how essential information on our website is. So, we conducted a very recent website overhaul! 🎉

✨Our site features comprehensive resources, including educational materials, FAQs, support networks, and the latest research updates on CFC Syndrome. We understand how important it is for families to have access to accurate and reliable information, and we've streamlined our content to make it easier for you to find what you need.

We are adding new information every day. If you do not see something you need, let us know!

Visit now! www.cfcsyndrome.org

🎸✨ NEW DRAWING DATE!  MAY 31st! ✨🎸 We’re excited to announce that the date for the drawing of our generously donated **S...
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

🎸✨ The countdown is on! ✨🎸 We’re just a few short weeks (23 days) away from announcing the lucky winner of our generousl...
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

Dr. Hux would like to thank everyone who participated in Phase 1 of the Caregiver Well-Being study. Your stories helped ...
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.

Address

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

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