As you know, it takes a village to care for someone with Dravet syndrome. It also takes a village to grow the Dravet Syndrome Foundation, and that village includes you, the hundreds of volunteers across the country who donate your time and energy to DSF. Did you know DSF has been staffed by only two full-time employees in the past several years, with 2-3 part-time employees? That means a lot of the work is done by volunteers, and this week we’d like to honor them. You.
Our volunteers donate time, which they often don’t have because they’re impacted by someone with Dravet syndrome, money (also often in short supply because… Dravet…), and energy. Some siblings run small lemonade stands just because they want to help. Some cousins start 5k run/walks for their affected family member. Aunts and uncles join in the fundraising. Some moms organize large galas and donate the proceeds to DSF. Some dads host Happy Hours for DSF or set up tents for walks their families organize. Some parents use their compassionate hearts to support each other in our Facebook group, and for every contribution, we are grateful.
It doesn’t matter what you do or how much you give. You are what keeps DSF going. You are how we fund research and make Dravet syndrome known in the scientific and medical communities. You are raising awareness. You are what other parents cling to when the darkness overcomes them – a listening ear, a piece of advice from a seasoned pro, or merely a companion to commiserate with while you figure this out together. However you volunteer, you are DSF.
From each of us at DSF, and from each of us who loves someone with Dravet syndrome, thank you.
Nicole is a former scientist and science educator who has an 11 year old son with Dravet syndrome and serves on the Board of Directors for the Dravet Syndrome Foundation. She reviews and summarizes research articles, making the content more accessible to those not involved in the scientific community.