Posts Tagged Rett Syndrome

Casting 4 a Cure – Supporting the Silent Angles


Life works its magic in mysterious ways and I believe certain people come into our lives for a reason. In August 2009, Teton Springs Lodge & Spa hosted the First Annual “Casting 4 A Cure” fly fishing tournament and party to benefit the Rett Syndrome Foundation. This is when I first met the Farnum family. Ella Farnum, the eldest sibling of the two Farnum children (a third, baby Owen has since joined the clan), was then a five year old delightful child with the hugest brown eyes, thick brown curly hair, the rosiest of cheeks and a smile that perpetually covered her angelic face. Ella was diagnosed with Rett Syndrome in 2008, and this party was for her, and for all the children afflicted with this cruel and unforgiving disease. Not being at all familiar with Rett Syndrome, I did some research.

Rett Syndrome is a unique developmental disorder that occurs almost exclusively in girls but can be rarely seen in boys and is caused by a mutation of the X chromosome. This disease doesn’t discriminate, striking all racial and ethnic groups. The parents, well, they never see it coming. These happy, lovely toddlers develop normally until approximately 18-24 months of age and then they begin to lose their speech and motor skills. The devastation to their small bodies doesn’t stop there. Rett Syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensation, mood, movement, breathing, cardiac function, and even chewing, swallowing and digestion.

Ella’s parents, Bill and Beth Farnum, are ferocious in their commitment to help find a cure for Rett Syndrome. Bill, being a rabid fly fishing enthusiast, decided to combine his passion for the sport into something much more meaningful that simply chasing the illusive Rainbow or Brown trout. “Casting 4 A Cure was born out of a passion to help the children and families afflicted by Rett Syndrome,” says Bill, executive director for Casting 4 A Cure. The Farnum’s commitment is raising awareness and funding research in the hopes of one day finding a cure for Ella, and all the silent angels. Bill continues, “Combining my passion for fly fishing and the fight against RS was a natural progression. Casting 4 A Cure has donated more than $100,000 towards the cause; our goal is to raise one million dollars by 2015 and have a cure in hand by 2020.” Bill realizes this is a lofty goal but one worth reaching for. It’s working.

The Fly fishing community has rallied in a big way & warmly embraces the cause. Integral to the “Casting 4 a Cure” fund raising weekend August 26-28 is the fly fishing tournament held for two days on one of the most iconic rivers in the west, the South Fork of the Snake. This year, over 20 teams, with the help of the expert guides from WorldCast Anglers, will head out early from Teton Springs Lodge & Spa and race to the South Fork for a two day tournament and a chance for major bragging rights (and some pretty great prizes too from the coolest companies: Sage, Patagonia, Scott Fly Rods, Fishpond, Dry Fly Distilling, and Kaenon).

However, the main event doesn’t require drift boats, waders, the perfect fly, or luck for that matter. The true heart of the Rett fundraising effort for this 2nd Annual Casting 4 A Cure soirée is happening at the Spud, Teton Valley’s historic drive-in theater on Friday, August 27th. In addition to first-run flicks, the remodeled Spud is hosting a variety of top notch music extravaganzas this summer season as well as other special events. Everyone is invited to this party, and encouraged to attend, the “Coca-Cola Casting 4 A Cure Concert” featuring live music by the renowned rock and blues band, The Freddy Jones Band with special guests Equal Eyes. Be at the Spud by 5:30 p.m., especially to snag some of the terrific door prizes by K2 Skis, Sage Fly Rods, Patagonia, Fishpond, Grand Targhee, to name a few.

Price for admission is only $20 and the kids 12 and younger are free. Tickets can be purchased online at or at the door. The feeling you’ll get for helping to raise money for critical Rett Syndrome research and family support, well, as they say, priceless! While enjoying the great music, food and friendly vibe, be sure to say hi to two of the most special people I have ever met; Beth and Bill Farnum. They’d like to tell you all about Ella.

Call Teton Springs Lodge & Spa for reservations and information: 877-787-8757 or Bill Farnum @720-635-2572.

See you at the Spud and be ready to party!

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