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Looking for a new fundraiser idea? Effie Parks, CTNNB1 Connect & Cure board member and mom to CTNNB1 son Ford, had a great – and successful – idea for this year’s Rare Disease Day. She joined forces with her good friend and fellow Rare mom, Jill Hawkins, to host a “Rare Soiree,” an auction and cocktail party held at a local art gallery space donated by the owner. Several sponsorships and a $25 registration fee helped cover costs. The evening sold out several times over and by the day of the party probably exceeded the venue’s capacity. But who’s counting when it’s for a great cause? 

Effie and Jill sent Save the Dates to their own lists via email, text, and social media. They secured a proclamation from Mercer Island’s Mayor and City Council declaring Feb. 28 as Rare Disease Day and urging public participation. The local newspaper ran a story (by CTNNB1 grandpa John Hamer) and the School Superintendent donned a zebra costume to film a video to show to school board members, families, and students!

Many of the 125+ attendees got into the spirit of the event by wearing zebra stripes, making for a vibrant display. A local duo performed live music. Donated artworks, items, and experiences were auctioned off by a local journalist and professional storyteller, himself father of a child with special needs. A raffle added to the fun – and revenues! Online donations were enabled for those who couldn’t make the party.

So how’d they do? Despite February 28th falling on a Tuesday this year, the Rare Soiree raised more than $60,000 in one evening! Effie and Jill had agreed to split the net proceeds evenly between CTNNB1 Connect & Cure and FAM177A1 (the genetic disorder affecting 2 of Jill’s children). Best of all, everyone had so much fun that the gallery owner and all of the guests are already planning a repeat next year – though they may need a bigger venue!

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