Hello Reader,
Nick and Michelle Seaver here, writing with an unusual ask for the MED13L community. Some of you met our daughter, Sophie, at the conference in July, where she led music therapy sessions.
Sophie's twin sister has MED13L. As with many of you, MED13L has defined much of our family’s life, including through our work with the incredible MED13L Foundation. MED13L has shaped Sophie in profound ways.
Sophie, a musician, recently submitted two original songs to the EveryLife Foundation’s Rare Artist competition. We’re thrilled to share that she is a finalist. May we ask you to take a moment to vote for Sophie’s song Another You? (and please share with others!). Note, if you skip the demographics question, it's super quick.
EveryLife brings artists with the most votes to Rare Disease Week in Washington, D.C., where they will meet with governors, senators and policymakers to advocate for rare disease. Hopefully, if Sophie’s there, she can help raise awareness for MED13L.
Writing these songs was a powerful experience for Sophie -- and for all of us. Sophie took on some very personal issues and asked hard questions about rare disease. It took a lot of courage to go through this process and we’re incredibly proud of her. We hope her work brings good things to MED13L and to the entire rare disease community.
We find all the pieces in this Everylife competition incredibly moving. We hope you do too.
As everyone here knows, living with a rare condition is an isolating experience. When we come together, that isolation can turn into shared humanity and the power to make real change possible. Maybe music and art can play a small role in that.
To borrow from Sophie's song: Together we are not so rare.
Thank you for your consideration.
With gratitude,
Nick and Michelle Seaver
P.S. Here’s another Rare Artist song Sophie (@sophieseaver_88) created, Where Normal Would’ve Been
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