Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease. Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard. But there is another just as important, if not more therapeutic, reason to attend.
It is a family reunion. An ever growing, ever changing family of advocates who ‘get’ the craziness of the choices we have made to fight for those we love and for ourselves. This is a family that celebrates the hard-earned wins and shares in the devastation of our losses. It is a family that is filled with drama and unique personalities but also comes together when times are tough.
Rare disease advocacy can be a lonesome experience. Many of us sit behind a computer for hours at a time, bypassing healthy meals and hobbies, just so we can make that next connection or complete a project that will – hopefully – make a change in our disease communities. We take phone call after phone call in hopes that the person on the other line will give us the opportunity to move our passion forward.
When we have a chance to all come together in person, it is cathartic. Not every conversation is about rare disease – there is laughter, personal stories, and a lot of hugs. There is a sense of relief being around people who know you, understand your passion, and are right there supporting the work you do with very few questions as to why you are doing it.
This photo represents me and two of my rare sisters (Monica Weldon, Cristina Might), all three of us moms to young rare children. All three of us are very passionate about the work we do, and we fly all over the country multiple times a year to make sure we are making progress in our rare disease community. We spend hundreds of hours a year advocating on behalf of those children who can’t advocate for themselves.
For me, the most fulfilling part of this sisterhood is not trying to explain why I am so passionate about rare disease. Believe me, this is a hard concept to try to explain to those who don’t live it. When people outside of my rare world ask me what I do, “rare disease advocacy” requires quite a bit of context – and they likely still won’t ‘get it.’ Even my teenagers have a hard time understanding my job other than I help people who have rare diseases.
Thank you to my rare disease community for your understanding, your support, your drive, and your hugs…and for letting me be who I need to be in order to do the work I want to do.