Inspired by the success of the Ice Bucket Challenge a high school club in South Korea is using an interest in rare diseases to raise awareness and funds for FOP research.
High school student G. Kim is passionate about science and genetics and hopes to pursue a career in biology or biochemistry. A documentary introduced her to FOP. She began reading through medical websites and articles and eventually discovered the IFOPA. During this time, G. Kim was fascinated by the work that goes into research and the hopes of curing rare diseases. She also saw the increased use of social media as an opportunity to raise awareness.
"The Ice Bucket Challenge was what really pushed me towards raising awareness for rare diseases and inspired me to do so," said G. Kim. "Even though my efforts as an individual may not be much, when done by a significant number of people, a difference can be made."
G. Kim went to friends with the idea of starting a club that would focus on fundraising and awareness activities for rare diseases.
"We decided to do so specifically for FOP," G. Kim said. "We were moved by the IFOPA community and its efforts to raise awareness, and also knew of the research being done for FOP."
The club held a fundraiser with their school where they posted newsletters with information on FOP and then had people participate in a raffle that involved answering questions about FOP. Their goal was to highlight the significance of research and work towards a cure as people understood more about the disease.
They also hosted a "Fire Noodles for FOP" challenge which asked participants to eat spicy noodles to raise awareness of FOP and encourage donations. The fire noodles were chosen to represent the flare-ups that people with FOP experience, and they made two explanatory videos stating the purpose for doing the challenge. To reach as large an audience as possible, they did everything in both Korean and English.
"I am glad that it was able to have an impact at least in our local community, and we are working to spread it to other schools in our area. As for our school, our peers and teachers really took genuine interest in raising awareness and knowing the importance of it. They not only participated in the event, but went further to encourage others to do so," said G. Kim.
Kim is now passing leadership of the club to others and helping ensure their work continues—and is grateful for the support and advice shared by the IFOPA in this process. "I don’t believe the work our club has done alone is greatly significant, but I do believe that if a big number of people work to raise awareness then together their efforts can make a huge impact," G. Kim explained. "This is what our club hopes to do, and for us, achieving that was through collaboration more than anything," G. Kim said. “I’ve learned it’s great and absolutely amazing to have something big happen like the Ice Bucket Challenge, but it also means a lot to do things within your school or your local community."
