CFC in the News

Aubree Dodd’s long walk
4-year-old with rare disorder finds help at the Permian Basin Rehab Center.
Read the full Article

Northern Cass students crown special classmate Homecoming Queen
At Northern Cass School Friday afternoon, a gymnasium full of compassion. The Jaguars took on Milnor-North Sargent on the football field, but before all that a Homecoming coronation that will be talked about for years to come.
Read the full Article

An Extraordinary Life
After struggling to find the answer to her daughter’s health problems, Glenda Hux’s finally received a diagnosis when Lillian was two-years-old. Doctors diagnosed Lillian with cardiofaciocutaneous syndrome.
Read the full Article

Deaf therapy dog provides unconditional love to sick, disabled in Oklahoma
Owner Billy Thomas takes his second therapy dog, Whiskey, to interact with clients at several Oklahoma City-area organizations dedicated to children and adults with disabilities and illnesses, including CFC Angel Amanda Holland.
Read the full Article

Faces of Rare Disease: CFC Syndrome
There are only 300 documented cases in the world of people living with a condition called CFC syndrome. One-year-old Myli Miller of Lacassine has this rare disease, but does not let it take away her spirit and smile, even on her sickest days.
Read the full Article

CFC and RASopathies Consortium meeting at the Technion
The CFC and RASopathies Consortium recently had their first meeting at the Technion in Israel. The Consortium is a group of scientists devoted to the study of CFC and related RAS syndromes. Visit their website for information about the members, a gallery of the first meeting, and more.
CFC and RASopathies Consortium Website

Tess Mountain meets her hero Dwyane Wade
Thirteen-year-old Tess Mountain had the chance to meet her idol, Miami Heat guard Dwyane Wade, all thanks to a Facebook page. Mountain suffers from a rare genetic condition called Cardiofaciocutaneous (CFC) syndrome that affects the heart, facial features and skin, but her passion for the Miami Heat never falters.
Watch the Video at KMSP Fox 9 | Watch the Video at WCCO CBS 4

Michael’s Transition: One Student’s Journey to Success
Michael is a wonderful, kind, and engaging young man who loves to help others. Though he is a teenager, Michael has struggled to learn independent work skills, an issue that Elim’s CORE program was designed to address. Thanks to dedicated staff, families, and willing students, many students like Michael are learning independent work skills, and thriving in the process.
Read the full Article | Watch the Video

Trapped in time
An article about the Wilds, a CFC faily from Wichita. “Six-year-old Owen Wild, who has a rare genetic disorder, will ‘always be a baby,’ his mother says.”
By Karen Shideler, The Wichita Eagle
Read the full Article

Vestal mom helps families worldwide
Brenda Conger organizes support group to help children who share the same rare syndrome. By Valerie Zehl, Press & Sun Bulletin
Read the full Article

What matters? When families affected by a rare disorder meet, it’s powerfully clear…
An essay and photos by CFC Mom Jennifer Bishop covering her experiences at the 2009 CFC International Conference in San Francisco.
Read the full Article

The Rarest of Challenges
Burnaby mother Denise Nagy lives life with what she calls a big question mark – will her four-year-old son Ashton be OK?
Read the full Article

The Boy in the Moon
For 11 years, writer Ian Brown and his family have dealt with an unexpected presence – his son, Walker, born with a rare and complex genetic disorder, CFC, which makes life very disorderly indeed.
Read the full Article

PBS Frontline: The Undertaking
The parents of two-yeard-old Anthony John Verrino, who was born with a rare genetic condition (CFC). They decided to share their story about their beloved son with others as a way to honor him — the “incredible little person” whom they were blessed to have.
Read the full Article

“The Outlook” from Alexander City, Alabama
May 3, 2003
Read the full Article

Little Maddy is all ‘smiles and chuckles’ despite her problems
By: Steve Baker
The Farnham Herald Series
Read the full Article

Discovering Jared
By Jamie Lampros
Ogden Standard-Examiner
Farmington parents find support as son faces rare challenge
Read the full Article

Family Mission
By Sharron Tregaskis
At CFC International’s Web site, www.cfcsyndrome.org, the abbreviation stands not only for Cardio-Facio-Cutaneous Syndrome, the name given to a rare medical condition, but also for Caring, Facilitating and Connecting, the organization’s philosophy for helping affected children and their families. That philosophy reflects the commitment and concern of its president, Brenda Shaffer Conger.
Read full Article

Alec’s Adventure
9-year-old embraces life as family deals with his rare speech disorder
By Nancy Bowman
Dayton Daily News: Monday January 24, 2005
TIPP CITY | Even the mysteries of a rare genetic disorder that severely restrict Alec Farmer’s ability to speak couldn’t stop the names of two special friends — Dandy and Puff — from quickly joining his limited vocabulary.
Read the full Article

Ordeal for Arroyo girl leads to triumph
Genes involved in rare illness are discovered in health breakthrough
by Nathan Welton
Published by The Tribune, San Luis Obispo, CA
An Arroyo Grande family has helped discover the genes that cause one of the world’s rarest genetic disorders.
Read the full Article