By E.J. Daws Explore Big Sky Staff Writer
Bill Farnum may never hear his daughter say “I love you.” He may never get the chance to walk her down the aisle, or see her leave home for college. These are some of the many reasons he stands knee deep in a remote Montana river, fly fishing for 24-inch brown trout near the Bar Z Riverside Ranch outside of White Sulphur Springs.
Ella Farnum, Bill’s 9-year-old daughter, has beautiful brown eyes, and a smile that warms the heart. She suffers from Rett Syndrome (RTT), a disruption of brain development, motor skills and communication that affects 1 in 20,000 young girls. She has difficulty sitting still, controlling her hands, sleeping through the night, and she cannot speak.
RTT is a rare developmental disorder that affects almost exclusively girls due to a mutation in the X chromosome. The syndrome develops rapidly after normal development during the first 12-18 months of life. Almost overnight, parents see their child lose most of what she’s gained, crumbling in their arms.
The disease strips away normal development, causing difficulty or complete absence of motor skills, speech, cognitive functioning, sensory perception and basic communication.
“It’s kind of like fishing” Farnum says about Ella’s daily routine. “When you wake up in the morning, you never know what the water is going to be like.”
Casting 4 A Cure
After Ella was diagnosed with RTT in 2008, Farnum, who lives outside of Portland, co-founded Casting 4 A Cure to build momentum toward finding a cure for the debilitating disease. He held the first C4C event that same year, bringing together a group of friends for a fishing trip in Steamboat, Colo.
The nonprofit organization combines his passions – friends, fly fishing and fundraising for RTT research, and growing public awareness about the disease.
Four years later, C4C holds three events annually at locations that have included the Smith River in Montana, Steamboat Springs, Colo., Victor, Idaho, and the Saltwater Flats in The Bahamas. In total, it has contributed more than $300,000 to RTT research, helping fund two clinical studies to find a cure and RTT family support.
Farnum, who has worked with Nike for 18 years as a sales director, says colleagues and other Nike guests have shown enormous support for C4C.
More than 200 people attended the C4C event in Victor, Idaho, this August, including corporate sponsors like Patagonia, Sage and Howler Bros.
Unlocking the door
The quest to find a cure for Rett Syndrome has taken enormous strides since 1999, the year Dr. Huda Zoghbi of Baylor University zeroed in on MPCE2, the exact gene where the mutation takes place. In a landmark 2007 study, scientists in Scotland were able to successfully reverse the symptoms of RTT in a genetic mouse model.
Since then, Dr. Steve Kaminsky, a C4C attendee and Chief Science Officer for the International Rett Syndrome Foundation, has seen the rise of two clinical tests – one at Boston’s Children’s Hospital, and one at Baylor – that he says could yield results within the next six weeks.
“Imagine the clinical trials as a long hallway, with 30-40 doors unopened,” Kaminsky said in a presentation at the Smith River event at the Bar Z Ranch this September. “We currently have opened two of the doors so far.”
Also that evening at the Bar Z, Farnum presented a $25,000 check to Dr. Kaminsky – the cost for a drug compound clinical trial.
“If we unlock these doors, we can unlock these little girls,” Kaminsky told the group.
The development of a cure for Rett Syndrome would be groundbreaking for the entire field of neuroscience, with implications for other synapse disabilities including autism and schizophrenia.
A cure may not be far off, considering scientists have located the gene mutation, and events like C4C are bringing together passionate anglers with the chance to donate the dollar that may find the cure.
For more information or to support C4C, visit casting4acure.com.