Girls on the Rise: Fly-fishing event raises money for Rett Clinic at Children’s Hospital Colorado

The Risers 4 Rett, a fundraising arm for the Rocky Mountain Rett Association (RMRA), is hosting its third annual R4R women’s fly-fishing event in Minturn Aug. 11-14, as well as the inaugural Girls on the Rise event on Aug. 14. Proceeds from both events go to RMRA, which in turn supports the Rett Clinic at Children’s Hospital of Colorado.

“I’ve discovered a whole new world about Rett Syndrome and why it’s important to raise money and find a cure,” said Terri Armistead, Minturn Mayor Pro Tem.

“I have three daughters myself. I love fishing for a cause and the event is a chance for me to teach philanthropy and donating your time and money for a good cause and at the same time, having a good time.”

RMRA has been hosting fly-fishing fundraising tournaments every spring and fall in Gunnison for years. Eventually, the idea for a women’s-only event sprouted up.

“We want girls to be more active in sports in general, and fly fishing is mostly a male-dominated sport,” said RMRA’s Ursula Webhofer.

“At the same time, we need to reach more girls.”

The idea for the Girls on the Rise event, which is focused on “spending the day cultivating and encouraging young women to be leaders and stewards of the water and in philanthropy,” according to the event site, was born out of a group of local women who attended the 2021 women’s event.

“It’s also a nice tie-in to Rett syndrome,” Webhofer explained.  

Rett syndrome is a neurodevelopment disorder that affects girls almost exclusively, affecting one in every 10,000-15,000 female births. Most babies with Rett syndrome develop normally for the first six months of life, but then experience a progressive loss of motor skills and language. Over time, movement coordination, muscle control and communication become extremely difficult or impossible, often leaving the child wheel-chair bound.

“It is devastating,” Webhofer said.

“They can’t express how they feel, they can’t control their body movements — anything — and mentally they are all there.”

The syndrome has no cure and while some women live into their 40s and 50s, the Mayo Clinic states, “currently it is not possible to make reliable estimates about life expectancy beyond age 40.” Due to its nature and rarity, it’s often difficult for pediatricians to diagnose.

“That’s why Rett clinics are so important,” Webhofer noted. “Parents are so thankful to be able to go to the Rett clinic.”

Risers 4 Rett’s fall, spring and summer events typically raise $250,000 gross annually for the clinic at Children’s Hospital Colorado.

The desire for young girls to be exposed to — and learn to enjoy — outdoor pastimes goes hand-in-hand with promoting awareness for a disease which prevents others from doing the same.

“Our motto for everything we do is “do what you love to help someone else,” Webhofer explained.

“In this case, do fly fishing — what you love — and at the same time, raise funds for someone who cannot fly fish, which are children with Rett syndrome.”

Webhofer said that many of the local women involved in the event, such as Armistead and Karen Gilbert of Moe’s Original Bar B Que in Vail, which is catering lunch for the event, echo the sentiment.

“They are very much into the idea of girls being more outdoors and at the same time making them aware of other kids who are not so privileged,” Webhofer stated.

The four-day women’s fly-fishing event, which sold out of its 26 slots, includes three nights and four days of lodging at the Minturn Inn and Eagle River Inn, three meals per day, access to private waters for fly fishing as well as professional guides and a casting clinic. In addition to the “small town fun in Minturn, a historic Colorado town,” the event site boasts whiskey and private yoga sessions as additional perks.

The Girls on the Rise event is open to 20 girls, age 7 and up, and runs from 10 a.m. to 2 p.m. out of Little Beach Park in Minturn. The day kicks off with Brennan Kammerer, whose twin sister has Rett syndrome, giving a conversation on what it means to be a sibling of a Rett child. A fly-fishing clinic, led by Rachel Schwindt of Eagle River Outfitters and Ryan Schmidt will follow. A yoga session, donated by Jocelyn Laferriere a Moe’s BBQ lunch, and a live auction are also on the schedule.

“Minturn has proven to be the perfect place to host a community oriented fly-fishing event. Yes, the surroundings are beautiful, but what makes it stand apart from all the other mountain towns are the people,” stated director of RMRA and Risers 4 Rett Jessica Lindsley.

“Each year we are blessed with local partners, sponsors, and guides that commit their time and energy to benefit the Rett Clinic at Children’s Hospital Colorado. We are honored to be a part of the Minturn community and look forward to many more events in this wonderful valley.”