Letter from our Founder: Dock Hops, Dad Jokes, and a Whole Lot of Heart 💖

Dear FAM Supporter,

While the word "disease" can dampen the spirit, our rare disease community is also a place of unexpected joy. I never imagined this would become my life's work, but for me and so many parents like me, it has brought a profound sense of purpose, a path to activism, and genuine happiness.

We call them the FAM Funnies—those belly laughs from Charlotte and Cooper when one of us tells a silly joke or acts ridiculous. Other parents in the FRND (FAM177A1 Related Neurodevelopmental Disorder) community have shared the same joy. It's clear that dad jokes are universally embraced by our community!

As the founder of the FAM177A1 Research Fund, I can tell you this: Nobody fights quite like we do—and nobody parties quite like we do either!

At our FAM JAM fundraiser, a unique auction item was a "Dock Hop" on Mercer Island. On a beautiful, sunny day, the winning bidders enjoyed a spectacular celebration. They cruised from one private dock to the next on two beautiful boats, complete with silly hats, custom koozies, cold cocktails, and delicious food. There was no room for the doldrums of the word "disease."

This joyful event is proof that when our community comes together, we make hope feel like a celebration. That's the FAM way: we give fiercely, we laugh loudly, and we turn every effort into joy.

This incredible day was made possible by the generosity of Erika & Greg Brown and Lyndsey & Brad Gillis, who won the auction item. They invited four friends each to join them aboard boats expertly captained by Danika & Jeremy Knievel and Grover Holtzclaw & Dan Nordale. Our gracious hosts—Karla & Richard Aylen, Kelly & Jim Weisfield, and Kristin & Greg Hart—welcomed the group with delicious food, drinks, and even a shot-ski. A special shoutout to Charlotte and Cooper’s Uncle Matt Minich for crafting the awesome Dock Hop koozies!

Changing the future for our FAM Friends shouldn’t just be meaningful—it should be fun. From the bottom of my heart, thank you for being part of this incredible, unstoppable, unforgettable force. You remind us that joy is part of the cure.

Warmly,

Jill Hawkins

Founder & President

FAM177A1 Research Fund

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