Student Spotlight - An Interview with Elijah
Destroy Duchenne is both an official organization and a club on campus focused on educating people about Duchenne Muscular Dystrophy. We spoke with Elijah, a 10th grade IB student and the creator of Destroy Duchenne, to learn more.
What is Duchenne Muscular Dystrophy?
● It’s a disease that gradually wastes away at your muscles over time and makes them break down due to a lack of a chemical called dystrophin, which repairs muscle fibers in the body. The lack of this chemical is caused by a genetic defect in the gene for dystrophin.
How did you go about creating your own organization?
● I basically began studying law relevant to running an organization and got together with some friends and started an Instagram, made a website, and really focused on spreading the word and spreading awareness about the disease and the organization. A big part was getting the word out.
We saw that you work with the Riverside ADA; do you feel like that helped you understand the legal process involved with creating your organization?
● Only to an extent. Riverside ADA deals more with criminal law, so it doesn't really apply to us. However, it did make us realize how it's important to get the legal stuff right and taught us how to appear more professional while working with adults.
What do you wish people knew about your disease?
● It's very serious—it's a fatal disease. It’s very important to know that it takes lives away from a lot of people. Many people don't even realize that their kids have it until age four or five, when they start to have difficulty walking and eventually keep falling over and needing their hands to walk. It's also important to know that there is a potential cure that could finish being developed within our own lifetime: CRISPR CAS-9.
For those who can't donate money, what is the next best way to help the cause?
● Word of mouth is priceless to me, telling friends about the organization and getting people educated about the disease is extremely important. People should know that this is a serious disorder, but that there is a potential cure for it in the form of CRISPR/Cas9, a recent tool that lets us edit existing genome sequences. If people would like to get involved without spending money, there is a club on campus called Destroy Duchenne.
If you would like more information on Elijah's organization you can visit their website here: https://www.destroyduchenne.org/