Roughly 22% of all cancer patients are told that their cancer is considered rare when diagnosed. However, according to a study conducted by Northwestern University, only about 3% of non-profit funds go towards rare cancer research. Westford Academy’s National Honor Society (NHS) is taking part in changing this by participating in The Rare Initiative’s fundraiser event called Wig Out.
Founded in 2020, The Rare Initiative is a non-profit organization focused on raising funds and informing people about all forms of rare cancer. Even though the founder, Jacqui Lewis, passed away in early 2022 after her initial diagnosis two years prior, her memory still lives on through her organization. Lewis’s goal was to raise at least one million dollars for rare cancers, specifically the Henri and Belinda Termeer Center for Targeted Therapies at Massachusetts General Hospital, and WA’s NHS is slowly helping add to her goal through Wig Out.
Wig Out is an annual awareness campaign that raises a large amount of funds towards rare cancer research and getting patients through possible life saving clinical trials. According to NHS co-advisor Kathleen Aylward, The Rare Initiative’s Wig Out is usually held each year on May 22 to align with the 22% of people around the world that are told their cancer is rare. However, since many seniors leave WA to do their capstone projects in April, NHS has held their own Wig Out on Dec. 22 to maximize the amount of participation for the past three years, starting in 2021. Because this year that date falls on a Sunday, they decided to move the event to Friday, Dec. 20, the half-day before winter break.
Aylward brought the concept of Wig Out to an NHS meeting in 2021 after seeing a segment, 5 For Good, on WCVB Channel 5 news with Lewis where she shares her own story with cancer and how she started The Rare Initiative. Seeing this segment sparked an idea in Aylward’s mind on how they could easily participate in something as simple and effective as Wig Out.
“We started [Wig Out in] 2021 [when] Cole Kirby was our vice president [and] he organized it and he was phenomenal [about] getting this event put together,” Aylward said. “So, [on Wig Out day], all our members will come into school wearing their wigs and we’re inviting everybody to participate in our event to raise awareness about rare cancers. And I know a lot of people make charitable donations around Christmas time, so it’s kind of a way to get a word out about this organization.”
After bringing this concept of Wig Out up to her co-advisor Gilbert Fuhr and the rest of NHS, it was a big hit. All NHS members and anyone else who wants to participate can wear any type of wig they want, fun colored ones or more natural ones. To make sure everyone can participate members of NHS strongly recommend that people buy their wigs during the sales on Halloween, making this day very inexpensive and more inclusive.
Along with wearing wigs on the given day, students are also encouraged to inform others about the cause and how it is an ongoing issue with rare cancers not having enough funding to put patients through possible life saving clinical trials, and the research that needs to be done in order to find those life saving cures. However, to be able to fund that research and trials The Rare Initiative asks people to at least donate $22 for those 22% of people battling rare cancer. NHS members, or anyone participating in their Wig Out, are asked to get a sponsor who will donate those $22 and publicize this donation to anyone else who is willing to support a good cause.
“NHS works to spread awareness about rare cancers. One of the main goals is to educate the school community about The Rare Initiative and why the cause matters,” NHS vice president Tanya Dayan said. “NHS wants to ensure that students and staff understand the significance of the event and how their participation is supporting cancer research.”
Even though the cause that The Rare Initiative is supporting and that NHS is helping to promote is very serious and can be life saving, Wig Out is also supposed to be a fun way of spreading awareness. Seeing students in the hallway with crazy colored or styled wigs is a very interactive way to get people talking about the uncommon cancers that do not get recognized enough.
“My favorite part about Wig Out is seeing everyone coming together to support this amazing cause,” NHS president Varnika Alla said. “[Also] all the fun pictures and hilarious wigs people wear, and the impact we can make on our community.”
