CFC International

09/24/2025

🌟 Are you new to the CFC community or recently received a diagnosis? You're not alone, and we're here to help.

Join Tuesdi Dyer, CFRE, Executive Director at CFC International,
Pilar Magoulas, MS, CGC – Chief of Genetic Counseling, Associate Professor at Baylor College of Medicine, Vice President of the CFC Board & Vice Chair of Research, and Ashley Genelin, Ed.S., Program Manager at CFC International for an informative and welcoming session about CFC syndrome, the mission of CFC International, our Family Support Network, and more.

We’ll also leave plenty of time for your questions—because we know that stepping into this community often comes with both uncertainty and hope. 💙

🔗 Click the link in the comments to register. We look forward to connecting with you!

09/11/2025

🌟 What an incredible day at the Kinley Klassic and Kami Too Golf Tournament on September 8th! 🏌️‍♂️⛳️

Together, you all raised an astounding $95,000 for CFC International! 🙌🎉

A heartfelt thank you to all participants, sponsors, and volunteers who made this event a remarkable success. Your unwavering support fuels our mission to provide vital support and research for all diagnosed with CFC syndrome!❤️

Stay tuned for photos of this amazing day filled with more 250 supporters in our Oklahoma City community!

09/05/2025

We are getting ready over here for the BIG DAY!

We are just 3 days away from the SOLD OUT Kinley Klassic and Kami Too! Golf Tournament on September 8th in Oklahoma City!

The swag bags are filling up, silent auction items are being inventoried, and we hope our 280 golfers are practicing their swings (don't worry we offer mulligans). We cannot wait to share what this amazing event brings to our community for 2025!

08/29/2025

Join us for an informative and empowering webinar with Morgan Jones, IEP trainer for MDE and a fellow CFC mom. Whether you’re just starting out on your special education journey or looking to better understand your child’s current services, this session is for you.
Bring your questions about special education and engage in meaningful discussion about you child's current and future educational experience!

Tuesday, September 16, 2025
7:00 p.m. EST

For more information and to register, visit our website: https://www.cfcsyndrome.org/patient-webinars

08/24/2025

💜 Research Opportunity for Families Who Have Lost a Person with CFC Syndrome 💜

We know that the loss of a beloved child or family member with CFC syndrome is an unimaginable heartbreak. In honor of their lives, researchers are working to better understand the causes of death in CFC, with the hope of providing clearer guidance to families and building a foundation for future research and care.

If you are a caregiver or loved one of a person with CFC who has passed away, you may be eligible to take part in this study. The survey takes about 30 minutes and will ask about your loved one’s health history and circumstances of their passing. You may take breaks at any time, and you can withdraw if needed.

Your participation in the CFC Mortality Study is completely voluntary, but your willingness to share your child’s story could help other families in the future and honor the legacy of your loved one.

✨ To learn more or take the survey, please visit: https://redcap.link/cfc-cod
If you have any questions, please reach out to the research team:
📧 Jacquelyn.Schatzman@bcm.edu
📧 plmagoul@texaschildrens.org

Together, through love and remembrance, we can continue to shine a light for CFC families. 💜

Thank you for your interest in participating in this research study on causes of death in Cardiofaciocutaneous syndrome. Please read the following information on the study purpose, procedures, potential risks and benefits, and participant rights. If you are eligible to participate in the study and w...

08/19/2025

🌟 Huge Thank You to Our Sponsors! 🌟

We are thrilled to announce that the foursomes for Kinley Klassic and Kami Too! Golf Tournament are officially sold out! A heartfelt thank you to all our incredible sponsors for their support in making this event possible. Your generosity helps us create an unforgettable experience for everyone involved!

Although the tournament is sold out, there are still ways for you to get involved! You can purchase a tee sign to showcase your support, register for lunch with us, or make a donation to help further our cause. Every bit makes a difference!
www.cfcsyndrome.org/kk2
Thank you once again to our sponsors and participants – we can't wait to see you on the green September 8th! ⛳️💚

08/11/2025

🌟 We are thrilled to announce that Arnold & Smith Law is one of two Crown Jewel Sponsors of the upcoming Kinley Klassic and Kami Too! Golf tournament on September 8th in beautiful Oklahoma City! 🏌️‍♂️🏌️‍♀️

It will be a day of fun, community, and friendly competition while supporting CFC International. With Arnold & Smith Law helping to lead the way, we’re ready to make this event unforgettable! ⛳️✨

Our ALMOST SOLD OUT event can be your chance to make a difference!
See more about our sponsor:
https://www.arnoldsmithlawfirm.com/

08/09/2025

🌟 We are incredibly proud to have Independent Opportunities Inc. as one of two Crown Jewel Sponsors for the Kinley Klassic and Kami Too! Golf Tournament, September 8th in Oklahoma City! 🏌️‍♂️🌟

Not only is their impact felt through the disability community, their unwavering support is vital in empowering the CFC syndrome community and making this event a remarkable success. Thank you, Independent Opportunities Inc., for your inspiring commitment and generosity! Let’s create an unforgettable tournament together! ⛳️💚
Learn more about the amazing work IOI does for the community:
https://ioi-tulsa.com

08/05/2025

📣 Upcoming Webinar: The Role of Occupational Therapy in CFC Syndrome (Presented in Spanish)

Join us Tuesday, August 26, 2025 at 8:00 p.m. EST for a special webinar (in Spanish) with Dr. Glenda Hux, focusing on how occupational therapy can support individuals with CFC syndrome at every stage of life. Discover how OT promotes development, independence, and quality of life—from early childhood through adulthood.

💬 Families will have the chance to ask questions at the end—in Spanish or English.

🌐 Closed captions will be available on Zoom for those who wish to follow along in another language.

About Dr. Glenda Hux:
Dr. Hux is an Assistant Professor and Researcher in the Department of Communication Disorders and Occupational Therapy at the University of Arkansas and UAMS. She brings not only her professional expertise in neurocognition and sensory integration, but also a deep personal passion as the mother of a daughter born with CFC syndrome. In honor of her daughter, she founded Lillian’s Legacy, advancing seizure research in CFC. Dr. Hux is a past president of the CFC International Executive Board and a recipient of the Giovanni Neri Award for her contributions to CFC research.

📅 Tuesday, August 26, 2025
🕗 8:00 p.m. EST
📍 Zoom – details shared when you register: https://www.cfcsyndrome.org/patient-webinars

08/01/2025

***There is still time! Slots available to foursomes in the afternoon!***

Do not miss the amazing 2025 Kinley Klassic and Kami Too Golf Tournament in Oklahoma City! Since its inception, this event has raised $1 million for two organizations dear to Shelly and Coby Greenhaw's hearts - CFC International being one of them.

Register now! And if you can't attend, purchase a $150 or $250 Hole Sponsorship! All proceeds for 2025 benefit CFC International.
https://www.cfcsyndrome.org/kk2

07/31/2025

🌟 Another amazing CFC family meetup! 🌟

Last Sunday, we had the incredible opportunity to host a CFC Family Meetup in Orlando as the Rasopathy Scientific Symposium concluded. It was a day filled with laughter, support, and meaningful conversations! 💙

Thank you to everyone who joined us—families, researchers, and advocates alike. We are so grateful to Dr. Rene Pierpont who shared an overview of the symposium's research presentations with our families. We not only shared some laughs (and even tears), but gained valuable insights on our shared experiences.

That's a wrap on our summer meetups! Until next time, let’s keep the spirit of community alive as we continue to support one another on this journey! 💪✨

05/14/2025

🤩 Check our upcoming CFC Family Meetups! We might be coming to a city near you! 🏙. 🏆Scholarships are still available too!🏆
https://www.cfcsyndrome.org/family-meetups