One in ten Americans lives with a rare disease, and only 10% of these people have access to FDA-approved treatments. Students in Craig’s Global Scholars program decided to bring awareness to this little-known health crisis.
Due to their efforts, on Thursday, Feb. 6, the City of Janesville issued an official proclamation to recognize Rare Disease Day.
Typically commemorated every four years on Feb. 29—the rarest day on the calendar—Janesville will celebrate it this year on Feb. 28 and light the Blain Gilbertson Family Heritage Pedestrian Bridge to bring awareness to the issue.
Craig High School’s Global Scholars Madeline Condon, Nicole de la Mora, Nathan DeCook, Marlon Kohn, Ella Shea, Lauryn Elzy, and Global Scholars Advisor Sarah Shea met with the city to receive an official proclamation declaring Rare Disease Day officially recognized in the city of Janesville.
But what is Rare Disease Day, anyway?
First, it might help to understand what a rare disease is.
A rare disease is a condition that affects 1 in 2,000 people, or less than 200,000 people in total. When every rare disease is compiled, however, the numbers are much more serious: 25-30 million Americans and 350 million people worldwide live with one.
Examples of rare diseases include cystic fibrosis, muscular dystrophy, hemophilia, and Huntington’s disease. More than 90% of rare diseases lack FDA-approved treatments, which means that many people with rare diseases are left without a solution. This is due to a lack of research exploring rare diseases, which leaves individuals with unanswered questions about their disease and without effective treatments.
By spreading awareness, the Global Scholars hope to increase the urgency for treatments and inspire people to study these diseases.
“There’s a lot of people with rare diseases who don’t get diagnosed until later in life because a lot of doctors like to treat the symptoms and not dig deeper to find the problem,” said Lauryn Elzy (from an article in the Janesville Gazette on the subject).
Rare Disease Day is a day of awareness sponsored by the National Organization for Rare Disorders (NORD). NORD advances care for those with rare diseases and helps them live their fullest lives by providing support, driving policy, advocating for equitable health policies, and advancing research. It seeks to raise awareness and advocacy about rare diseases and the importance of treatments and generate support for everyone on a rare disease journey.
The road to awareness around Craig High School and Janesville started when Lauryn Elzy brought the idea to the Global Scholars group.
As a part of their certification, they were looking for a service project. Rare Disease Day just “clicked,” says Nicole Del La Mora, a sentiment the group echoes. The Global Scholars Light Up for Rare Committee—the name of the group organizing the project—seeks to raise awareness about rare diseases in Janesville’s community and the necessity for better support and treatments for those with a rare disease.
Global Scholars’ mission statement says that “Awareness is the first step to advocacy that creates change in policy.” Through their efforts, they hope to encourage increased compassion within our community and inspire others of our generation to get involved locally.
Global Scholars brought awareness to the day last year, leading a dress-up day on February 29th. However, the group had bigger plans for this year to build upon their prior efforts and bring the project to a higher standard. Along with in-school activities, they wanted to bring Rare Disease Day to the wider community. The group had been struggling to reach Governor Tony Evers’ office about lighting up the Capitol but reached the City of Janesville on the first try.
After speaking with the city in late January, the group coordinated with City Hall and Mr. Nicholas Faust, Assistant to the City Manager, for the issue of an official proclamation declaring February 28th, 2025, as Rare Disease Day in Janesville.
The group accepted the proclamation on February 6th. Janesville’s Blain Gilbertson Family Heritage Bridge will be lit up in neon blue, pink, green, and purple on February 28th, making Janesville the only place in Wisconsin to have a location alight for Rare Disease Day. Lighting up monuments has been a Rare Disease Day Tradition since 2019 to support those affected by rare diseases.
“It’s incredible that we get to bring this global tradition to Janesville,” said senior Madeline Condon, a co-founder of the committee, “The city has been amazing to work with and we are so grateful to have their support.”
It’s estimated that 36% of CHS students and staff are affected by a rare disease, either by having one or someone close to them affected by one. With the administration’s help, the group has organized a week of awareness for Rare Disease Day from February 24th-26th. Students will hear daily announcements, enjoy themed drinks and snacks in the Craig Corner Store, and see a display case across from the Commons. The committee will have a booth at parent-teacher conferences with coloring sheets, information cards, and stickers to raise awareness about rare diseases and NORD among the student body and parents.
Students can show their support on February 26th by dressing in black and white. Additionally, students can post a photo of their outfit to social media with #ShowYourStripes! The Committee hopes everyone will join them on the 28th to view the Blain Gilbertson Family Heritage Bridge and its new colors!
Congratulations to Craig’s Global Scholars for taking a big step in raising awareness of rare diseases! Condon has high hopes for the future, “I hope the success of our committee shows our generation that we can make a change in our local community and have an impact.”
For more information about Rare Disease Day and to get involved, visit NORD’s website at https://rarediseases.org/.
