Outreach Report: Building awareness of Duchenne muscular dystrophy

By Hannah Tam, Northeastern University

With the Boston Marathon just around the corner in April 2016, Northeastern University organized a 5K run on campus. We realized this was the perfect opportunity for our ASBMB Student Chapters Day of Service outreach event, with approximately 200 runners and spectators spanning a very wide age range coming to campus. We chose to talk to the public about Duchenne Muscular Dystrophy (DMD), a progressive muscle degenerative disease that affects 1 in 3,600 boys.

Our overall purpose was to talk to the public about DMD, how it affects the community around them, and how they could potentially help. The organizers of the 5K run allowed us to set up a table near the finish line. Because we had to gear our conversation about DMD towards a non-scientific community, we briefly talked about the affected gene and, in general terms, how the protein dystrophin functions. We explained the reasoning behind why the disease specifically affects boys (i.e. overall basis for X-linked disorders). If anyone was interested, we also talked about the upcoming FDA hearing for a new potential treatment for DMD that utilizes the exon-skipping mechanism. If approved, this drug, developed by a local company in Cambridge, MA, would be the first to be approved in the U.S for the disease. Additionally, we aimed to also explain the overall basis for rare genetic diseases and how fundraising and volunteer support are always needed for them. Our personal connection with the Jett Foundation, a non-profit support group for people with DMD, allowed us to talk about fundraising information for the Jett Foundation and upcoming volunteering opportunities for summer camps. Particularly, we noted that the Jett Foundation was looking for volunteers for Camp Promise, a free camp for individuals with DMD or other neuromuscular disorders. With that in mind, we were able to get the race organizers to insert promotional flyers about volunteer and/or fundraising for Camp Promise into the bags that every registered runner received.

Generally, we received positive feedback from the organizers and participants for our outreach table and flyers. Our strategy of supplying different kinds of snacks at the table and having it be very visible seemed to be successful in drawing attendees close to our table after the race. Many participants asked questions about the disease and how they can get involved in supporting the cause. Overall, we were able to reach a diverse audience about a disease that affects an individual’s ability to run and exercise in the short term, and survive in the longer term. From our ASBMB Student Chapter, four members volunteered at the outreach table and two members participated in the race.

We were fortunate to have the university’s Athletics Department be our partner organization. Especially for smaller chapters, finding a partner organization is crucial for a successful outreach event. We generally found that it was easier to partner with the university as opposed to outside organizations. Our chapter joined an annual event that was already established and highly publicized, meaning that the necessary advertising, location, recruiting participants, and other logistics were not problematic for us at all. The optimal placement of our table near the finish line along with our informational inserts in each participants’ bags not only helped raise awareness for DMD but also helped us receive recognition for our student chapter. In the future, we plan on organizing more outreach events (on- or off-campus) that encourage awareness and communication to the public about science-related issues.

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