Most cyclists who ride on the Gene Team at Courage Classic participate in the event because they or someone they know has been impacted by a genetic metabolic disorder.
But something else is in these patients’ and families’ DNA: giving back.
Gene Team riders are high energy and full of passion for their mission, raising funds to help children with these rare inherited disorders, such as Phenylketonuria (PKU), many of whom have to be on low-protein diets. This energy and passion are evident in the fact that the Gene Team will surpass the $1 million mark in fundraising for Children’s Hospital Colorado Foundation this year.
Formed 17 years ago, the Gene Team was founded by Laurie Bernstein, the director of nutrition at the Inherited Metabolic Diseases Clinic at Children’s Colorado, as a vehicle to shed some light on the challenges faced by kids suffering from these health complications.
“I decided that our clinic should do something to raise money for Children’s Colorado,” said Bernstein. “Metabolic diseases aren’t as common or well known as other diagnoses, such as diabetes or cancer, so we thought we would bring some awareness to what our kids go through.”
Children born with metabolic disorders are unable to convert the food they eat into energy the way someone with a normally functioning metabolism would. Most people diagnosed with a metabolic disorder cannot eat meat, cheese, pasta, bread, peanuts or soy, making it difficult for these children and their families to lead normal lives. If a metabolic disorder goes untreated or undetected, it can lead to mental retardation, developmental delays, organ damage or death.
The Gene Team started out with just six riders, but it has grown over the years to include as many as 123 riders and several corporate sponsors that make low-protein foods. As the team gained momentum, so did its fundraising totals – and its impact.
“It has completely changed lives,” said Bernstein of the funds raised by the team she still captains. “It has supported families that couldn’t afford low-protein food so their children could eat; it has sent families to conferences; we have created camps; we have created education models that have been distributed all over the world; and it has paid for research that wouldn’t have happened without those extra dollars.”
Patients, families, caregivers and sponsors never lose sight of the reason they ride - each team member bikes the tour with the names of all of the children who are riding and all of the children who have passed away printed inside their pockets.
“I always say that when we’re riding the mountains, and we need our wings, these angels help us over,” said Bernstein.
Every year during Courage Classic weekend, the team hosts a potluck dinner to celebrate their accomplishments. Families and sponsors donate low-protein food and Bernstein commemorates the occasion with a poem, which she writes every year to recognize those who ride and honor those who have passed away.
“It’s very powerful because Children’s Colorado is such a phenomenal facility,” added Bernstein. “Because these diseases are chronic, we as caregivers have the gift, if we’re lucky enough, of being able to help these children and their families throughout their lives. You’re invested on a very different level.”
This year’s dinner will be one for the books as the team celebrates surpassing the impressive $1 million fundraising milestone.