Living with Rare Diseases and How to Raise Awareness
The 180th episode of Speedify LIVE is a very special one as we are joined for #RareDiseaseDay by artist, Twitch streamer and rare disease advocate, Sunny, aka InsomniaDoodles, and Mark Beare, board member of CureCMD, the foundation for Congenital Muscular Dystrophy research.
We chat about the importance of raising awareness, what CureCMD does, and how streaming and social media helps the cause.
Here are our 5 takeaways from our Rare Disease Day special:
- Mark tells us that he became a board member of CureCMD about two years after they got his daughter’s diagnosis and has been working with the organization since! It’s an organization founded by parents, to help raise awareness and money for research on Congenital Muscular Distrophy. They have a strong community that shares their knowledge and experiences with each other.
- Everyone does something different for Rare Disease Day: Sunny streams all day and for every $5 donation she draws a doodle on request, while reading patient stories on rarediseaseday.org; Mark is very active on social media, trying to build awareness; while for CureCMD it’s about advocacy and getting those affected to share about the day, and raising money for charity.
- When it comes to streaming, both Sunny and Mark agree that every view matters! They say that even if just one person watches the stream, like those on Sunny’s Twitch channel, or a video they make about the cause, it’s still one more person who will become aware of rare diseases, and that matters.
- Sunny tells us that Zebras are the symbol of rare diseases! She mentions the National Organization for Rare Disorders, one of whose key messages is that “when you hear hoofbeats it isn’t always a horse, sometimes it’s a zebra” in response to what’s taught to medical students, having to look for the most common diagnosis first instead of more exotic ones.
- In regards to using social media, Mark says that while Twitter may have a broader reach, they’re mainly using Facebook: they originally created a Facebook Page for their daughter after her diagnosis to share information with others, raise money and get advice, while there are CureCMD groups which serve as a great resource, with the option to look up any keyword that was ever posted.