Risers 4 Rett: Raising Money for Rett Syndrome Through Fly Fishing

Colorado is a beautiful state for fly fishing, and it attracts many people who love the sport. A group of anglers from this state has joined together, united by both their passion for fly fishing and their devotion to the Rett syndrome community. They call themselves Risers 4 Rett, and they serve as the main fundraising source for the Rocky Mountain Rett Association.

Risers 4 Rett

Risers 4 Rett raise money for Rett syndrome through their fishing events, which gather nearly $500,000 annually. All of this money goes to help the Rett syndrome community in some way, whether it is used to fund research or for the Rett Clinic at Children’s Hospital Colorado. This clinic is important to the Rett community; in fact, many people move to Colorado for the care they can receive there.

One Riser 4 Rett, Peggy Stevinson, loves being able to support a rare disease patient population while doing something she enjoys so much. Her passion for philanthropy is able to combine with her love for fly fishing.

About Rett Syndrome

Rett syndrome is a severe, rare neurological disorder that primarily affects females. It was once thought to be a form of autism but has since been distinguished as its own condition. It is a genetic disorder, with a mutation occurring on the X chromosome. The exact location of this mutation and its effects are unknown, but researchers do know that it is typically a sporadic mutation. Symptoms of this condition usually appear between the first 12-18 months of life. Effects include slowed brain growth, a small head, issues with muscle coordination, social anxiety, lack of language skills, seizures, uncoordinated breathing, and a tense or irritable disposition.

After these symptoms are noticed, doctors will conduct a clinical examination and rule out other conditions, such as autism. Genetic testing will be used to confirm, and it can also show the severity of a specific case. There is no cure for Rett syndrome, and treatment consists of symptom management. Doctors will suggest physical, speech, and occupational therapy. They may also prescribe anti-seizure medications.

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