“The next young generation can play a pivotal role in supporting the rare disease community. With this year’s STRIVE Award, we can equip students with the essential tools and knowledge needed so they can be young Duchenne ambassadors in their community.” – Richard Horgan, Founder and President, Cure Rare Disease
The rarity of diseases such as Duchenne muscular dystrophy means that public awareness is often limited, or in some cases non-existent. This general lack of understanding can be particularly problematic for children with Duchenne, who can feel misunderstood and stigmatized by their condition when at school.
Cure Rare Disease, a patient organization based in Boston, U.S., recognizes the importance of exposing children at an early age to rare diseases and believes that by normalizing conversations about Duchenne in school settings, a greater sense of empathy and understanding between students is fostered. In turn, this helps individuals to become more cognizant of the unique emotional and social challenges their peers with Duchenne may be experiencing.
Cure Rare Disease have used the funding from their 2020 STRIVE Award to run a student education and life science immersion program. The program provides a tailored two-day training course to students, so they have both the skill set and a solid foundation to become Duchenne ambassadors in their local school. To date, 30 students have been trained as ambassadors and have gone on to educate their own school communities about Duchenne through Cure Rare Disease events, meetings, and fundraisers, as well as providing support to their fellow Duchenne classmates by facilitating peer-to-peer engagement opportunities.
Cure Rare Disease was also able to arrange a tour of a small research laboratory, which provided ambassadors and Duchenne families with the opportunity to learn more about the ongoing advancements within the biomedical and pharmaceutical industry that are aiming to improve quality of life for rare disease families. The training program and tour have inspired some student ambassadors to join Cure Rare Disease as interns to be able to continue their work.
“The next young generation can play a pivotal role in supporting the rare disease community. With this year’s STRIVE Award, we can equip students with the essential tools and knowledge needed so they can be young Duchenne ambassadors in their community.”
Richard Horgan, Founder and President, Cure Rare Disease