Matt DiVenere

Hey @jerseymikes - it’s Effie Parks, host of Once Upon a Gene and probably the top user of your app west of the Mississippi 🥖💳 (check my rewards, I dare you). Here’s the deal: My son Ford (who is turning 9 in only 6 days!!) has CTNNB1 Syndrome - a rare genetic disorder affecting just 450 people in the world. We’re flying from Seattle to Boston for our once-in-a-lifetime family + research conference. On Thursday, July 9, before the full conference begins, 105 of us - medical teams, kids, parents - will be gathered for a full day of natural history evaluations. That means blood draws, motor assessments, eye exams, speech assesments, EEG's and a lot of bravery. It’s exhausting. It’s emotional. It’s critical. And it’s part of our path toward clinical trials and a treatment. So here’s my substantial ask: Will you sponsor lunch for 105 people? These aren't just sandwich-loving folks. They’re families who fund science with bake sales and lemonade stands. Who host birthday fundraisers instead of getting presents. Who often feel so isolated from the rest of the world. And they’re showing up because our kids deserve more than “there’s nothing we can do.” You’ll be feeding doctors, researchers, exhausted parents, and heroic kids who will get to be in a room with others who look like them. We’re scraping by to be in Boston - because we believe there is something that can be done for our kids and there is nothing like being with people who get it. Embassy Suites, Waltham MA. Thursday, July 9. We’ll bring the gratitude, laughter and a thank you sign with smiles! @jerseymikes - be our “Yes, You get a sandwhich!" #SubsForScience #CTNNB1 #RareDisease #JerseyMikesGives #OnceUponAGene 🖤 Effie & Ford 📍Seattle ➡️ Boston 📆 July 9 📍Embassy Suites, Waltham MA

'@Matt_DiV this has been great! Let's wrap on this one. Q7: Where are things going? #AMABCHAT #ContentMarketing