Niwot High School Clubs - Spotlight on Students for Rare Diseases

Niwot High School is host to over 60 student-run clubs, and one stand-out is the Students for Rare Diseases Club.

Students for Rare Diseases is a club of students with the shared goal of educating and spreading awareness of rare diseases to improve and better the lives of individuals living with rare disorders, and the lives of their families and caregivers. According to the SFRD website, if 1 in 10 Americans has a rare disease, it is likely that roughly 118 Niwot students struggle with a rare disease.

SFRD is run by Keagan McGuire, who started and is the president of the club, and vice-president Ashley Ahrens. Teacher facilitator and science teacher Nathan Gravelding holds meetings in his room after school.

Club members Angeli Nguyen, Claire Jensen, Sofia Burks, Emelia Hamlin, Jon Hu, Samantha Kintzel, and Cora Cox have spent time creating posters displayed throughout Niwot, hosting a bake sale, sending emails to advocate for different rare disease issues that can be improved by legislation. They also post infographics and personal stories on the club's Instagram account (@nhs_for_rare_diseases).

The club is currently working on a new awareness initiative related to education about rare diseases. One unique thing about this club is that time spent working with the club counts as community service hours.

The personal stories the club members have shared on social media have done great things for their cause, furthering their message and goal to educate the public on various rare diseases that affect each and every person's community. "I think that personal connections to people with rare diseases are one of the most important aspects to raising awareness," said McGuire.

"I started this club to raise awareness for rare diseases –- rare diseases are a cause that is quite close to my heart as both of my brothers have rare diseases," McGuire said. "We won the genetic lottery in the wrong way unfortunately. Rare diseases are also far more common than people think. Ten percent of the population has a rare disease.

"I will also say that I have met many people at Niwot who have rare diseases, and even have received emails from past Niwot students who have rare diseases, about the club. This club serves as both a safe place and to raise awareness, and contrary to popular belief, you do not have to have a rare disease to be in the club. I myself do not have a rare disease."

Bringing awareness to rare diseases and how they affect every single person along with the world around them, Students for Rare Diseases is a club that educates and sheds light onto topics that aren't commonly talked about, leaving students who have dealt with a rare disease in any capacity feeling less alone. For more information on rare diseases go to SFRD's Instagram (nhs_for_rare_diseases) or visit https://globalgenes.org/rare-disease-facts/.