advocacy

Spreading Awareness About Pompe, One T-shirt at a Time

I like to say that I’m a walking billboard for Pompe disease advocacy — not just by the way I walk, but by the messages on my clothes. I’m a huge sports fan and go to a lot of sporting events, so after getting my diagnosis of…

What I Wish Strangers Knew About My Son’s Rare Disease

When strangers notice the differences between my son, Cayden, and other 4-year-olds, they usually have a lot of questions. While I genuinely don’t mind taking the time to educate and inform people about infantile-onset Pompe disease, explaining things over and over can be a bit overwhelming. I can’t expect people…

Welcoming New Pompe Parents to a Supportive Community Brings Me Joy

I will always be grateful I found our Pompe disease family. It brings me great joy when others find us and join the community, too.  A Facebook blog I made for my 3-year-old son, Cayden, started off fairly small. But over the…

Advocates Lobby US Congress During Virtual Rare Disease Week

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…