Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Rett is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. This distructive disorder is caused by mutations on the X chromosome on a gene called MECP2.
Symptoms of Rett appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably.
Rett causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.
Casting 4 A Cure partners with research and family support organizations such as Rettsyndrome.org and The Rocky Mountain Rest Association to support critical research and family support programs, and have provided over $1,150,000 in program support.
WHAT WE DO
Every Cast Gets Us Closer
Casting 4 A Cure started with a need to help a little girl live a life up to her full potential. And an idea to connect that need with an industry filled with compassionate, caring, and generous people. By combining two of his passions, fly fishing and fund-raising, Bill Farnum and his wife Beth set off to help save their daughter Ella from a cruel and destructive disorder that has taken much from her and thousands of girls like her.
As Rett Syndrome is a very rare disorder, the majority of our funding for research has to come from private sources. Your generous donation will help us find a way for our girls to lead a “normal” life filled with tea parties, high school dances, soccer games, and being able to say “I love you Mommy and Daddy.”
Casting 4 A Cure partners with research and family support organizations such as Rettsyndrome.org and The Rocky Mountain Rett Association to support critical research and family support programs. Since our inception in 2008, we have provided over $1,000,000 in program support.
Casting 4 A Cure is an IRS certified 501c3 non-profit organization.