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In order to support the Med13L Foundation cause it is critical that we get more people involved in hosting and sponsoring events to raise money and awareness.

From Our President

We Appreciate You. We Need Your Help.

A few years ago, when I started to work on the Foundation’s mission to find medicines for MED13L, I felt like I’d been dropped in the middle of a thick jungle at night with nothing but a candle and a pocket knife, not even sure where the mountain was that we had to climb.  Then a small group of parents joined in the effort and all of a sudden we could band together to start to find and move down a path.  We’ve made incredible early progress, way more than we dreamt was possible.  It’s all because of this small group of committed parents — and the engagement of the broader community with things like research studies, patient surveys, volunteering and fundraising.  We’re just beginning.  We’re all living at the dawn of a “Golden Age of Medicine,” where tools like AI, high-throughput assays and genetic medicines like CRISPR and RNA therapeutics are opening up incredible possibilities that weren’t available to rare diseases like ours, even just a few years ago.  To take advantage of these possibilities, we need help!  We are grateful for all the engagement thus far.  It’s exciting to see our community numbers grow by the day.  Our hope is that this engagement will only grow.  It’s more than a hope – it’s a dream that burns in all of us.  Every day counts for our MED13L family members.  There’s so much to do!  Please join our efforts.  The more people lean in, the faster we can climb the mountain ahead.

– Nick Seaver