CFC International

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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.

11/24/2025

🌟 Unstoppably Bold Research! 🌟

We are thrilled to shine a spotlight on the incredible work of CFC syndrome researchers. The University of Minnesota team, led by the unstoppable Dr. Rene Pierpoint, has revolutionized our understanding of seizures in CFC syndrome. This was made possible by research grants funded by CFC International.

Dr. Pierpoint's dedication runs deep—she has spent decades committed to improving the lives of CFC patients. A remarkable legacy inspired her passion for this work; as a child, she watched her mother, the late Dr. Mary Ella Pierpoint, provide life-changing insight, research, and care to the CFC community.

We are immensely grateful for the unwavering commitment of researchers like Dr. Rene Pierpoint. They bring hope and advancement to our small but mighty CFC patient community. Thank you to our donors for supporting CFC International research, and thank you to our relentless researchers pursuing better treatments with compassion! 💙

11/17/2025

🌟 Upcoming Webinar: Understanding Seizures in CFC Syndrome with Dr. Daniel Kenney-Jung

Join us for an informative and family-focused online webinar with Dr. Daniel Kenney-Jung, a pediatric neurologist and epilepsy specialist at Duke University, and valued member of the CFC International Medical Advisory Board.

🧠 Topic: Seizures in CFC Syndrome — What to Look For and How to Identify Them

📅 Date: Nov. 18, 2025
🕒 Time: 8:00 p.m. EST
💻 Location: Online (registration link below)

While some seizures are easy to recognize, others can be subtle—especially in children with CFC syndrome. Dr. Kenney-Jung will explain what seizures are, how they affect the brain, and how to spot the less obvious signs in your child or loved one.

About Dr. Kenney-Jung:
Dr. Daniel Kenney-Jung received his MD from Tufts University School of Medicine and completed his pediatric neurology residency and fellowships in epilepsy and neurophysiology at the Mayo Clinic. He now serves as an Assistant Professor of Neurology at Duke University, where he focuses on epilepsy, neurogenetic, and neurodegenerative disorders.

This session is designed especially for parents and caregivers who want to better understand and recognize seizure activity in those with CFC syndrome.

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

11/17/2025

🌟 Together, we are unstoppable! The CFC syndrome community is a vibrant tapestry of strength, resilience, and unwavering spirit. Each person, family member, researcher, and dedicated clinician embodies boldness, pushing boundaries and inspiring one another every day. 💪✨

We are not defined by the challenges of this rare disease, but empowered by our shared experiences and triumphs. Let us continue to support one another, uplift our voices, and raise awareness about CFC syndrome. Together, we are unstoppable! 💚

11/14/2025

Join us Wednesday, Nov 19 at 7pm ET / 4pm PT!

A practical, no-pressure session hosted by Geo Beek, trained genetic counselor and Head of Partner Management at Citizen Health.

We'll walk through how families are using AI Advocate to:
✔ understand genetic + medical reports
✔ prepare for IEP or school meetings
✔ decode provider notes
✔ organize records for appointments

You’ll also hear how other families use AI Advocate day to day—plus simple tips for keeping your information safe. Your medical information stays private and secure within Citizen Health and is never shared with third-party AI companies or used to train their algorithms.

👉 Sign up → https://ciitizen.zoom.us/webinar/register/WN_UJYs46AFS6O80J2XS_RcWg]

This webinar is for informational purposes only. No medical advice will be provided.

Your medical information stays private and secure within Citizen Health and is never shared with third-party AI companies or used to train their algorithms.

11/13/2025

🌟 Siblings are truly amazing, especially when it comes to supporting their brothers and sisters with CFC syndrome! 💖

Tag a sibling you know that deserves to be recognized for all they do for their brother or sister with CFC syndrome.

Nancy, Xavier's sister, is an example of all the ways siblings step in to improve the life of their sibling with CFC syndrome. Some of Nancy's earliest childhood memories include being an advocate and additional caregiver for Xavier. It's no surprise, then, that Nancy is a tireless volunteer for CFC International and a PhD researcher studying the impacts of caregiving for individuals with a rare disorder.

Our CFC siblings inspire us with their love, inclusion, patience, resiliency, compassion, advocacy, and unwavering commitment to their brother or sister. However, being a sibling to someone with CFC syndrome can also be challenging. Studies show that siblings of individuals with rare diseases experience increased anxiety, isolation, depression, and fear. Knowing this makes them all the more amazing, an example of being unstoppably bold!

Let's celebrate these extraordinary siblings for being not just siblings, but also allies and champions! 💚

11/12/2025

🌟 Na'Ziya is a shining star with a heart full of joy. 💖 But behind her every step of the way is an incredible woman—her mom—who moves mountains every day! 🏔️

From moving states and adjusting careers in hopes of giving Na'Ziya the best possible care, to focusing each and every day on keeping Na'Ziya healthy while being there for her other children, Nicole exemplifies what it means to be "unstoppably bold!"

When parents learn that their child has a rare disorder like CFC syndrome, they become bolder and stronger than they could ever imagine. They are advocates, fundraisers, caregivers, educators, and nurturers all in one! Nicole proves what our parents all know... that with love and determination, anything is possible. ✨

Tag a parent you know that is unstoppably bold!
Let's celebrate the amazing parents and caregivers who inspire us to reach new heights! 🌈💫

11/10/2025

More event photos? That's right! We are still sharing photos from more of Saturday's Unstoppably Bold Day events. We are also sharing a little surprise info for next year, so scroll to the end of the photos.

It's our SAVE THE DATE!
Unstoppably Bold for CFC Syndrome Day will take place on Saturday, November 14, 2026.
Mark your calendars and let your creativity flow!

11/10/2025

🌟 This CFC Syndrome Awareness Month, we continue celebrate the Unstoppably Bold spirit of our community, especially people like Natalie. Her journey is a testament to resilience and determination, inspiring all of us all. ✨

As Natalie's mom beautifully said, "Despite the challenges she faces, Natalie approaches life with courage and determination that inspires everyone around her. She reminds us that boldness isn’t about perfection, it’s about refusing to give up. Her spirit lights the way for everyone who knows her."

Let’s honor and spread awareness for CFC Syndrome, and support our amazing community of individuals with CFC syndrome, their loved ones, and the amazing people who advocate for us all! 💚

11/09/2025

🎸 Exciting News! 🎸
The Birchmere Theater in Alexandria, Virginia, is hosting an Unstoppably Bold opportunity to win a signed guitar, with ALL proceeds going to CFC International! 🎤✨

Artists who have already signed the guitar include legends like Buddy Guy, Lyle Lovett, and Steve Vai - and the Birchmere will continue to gather more signatures from their shows over the next five months.

Mark your calendars and share this post! The drawing will take place on April 25, 2026, and you do not need to be present to win. Don't miss your chance – purchase your entries now using the QR code! Sale of entries closes April 24, 2026. $20 for one or $100 for 6 entries. 🍀

11/09/2025

🌟✨ What an incredible time at the Unstoppably Bold for CFC Syndrome events throughout our community! From inspiring talks to heartwarming connections, each gathering reminded us of the strength and resilience of everyone involved. 💪❤️

A huge shoutout to all participants, organizers, and supporters for making these events so memorable. Your passion and dedication shine through every moment! 📸

And the best part? More photos are still rolling in! Can't wait to share even more events with you all in the coming days. Stay tuned, and let’s keep celebrating the amazing journey together!

11/08/2025

"We are Unstoppably Bold! I have been through a lot as a person with CFC Syndrome - which is an extremely rare genetic disorder - but despite these challenges, I persevere and am living a full life in my community."

Gigi's voice is loud today as she shares what makes her unstoppably bold! By bringing awareness and raising funds for critical CFC syndrome research, she is a leader in shaping the future of individuals with CFC syndrome and giving hope to all of us.

We hear you roar, Gigi! Today and every day! Thank you to you and your amazing family for all that you do to raise awareness about CFC syndrome!

11/08/2025

Our Unstoppably Bold family in the UK is using their steps to bring awareness to CFC syndrome! Thank you Doody family and your fabulous community!

Address

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

Website

http://www.cfcsyndrome.org/

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