Why We Drove 3 Hours to Donate Samples (And Why You Should Too!)

When you are navigating a rare disease journey, you quickly learn that every drop of data counts. A few weeks ago, our family had an unexpected, last-minute opportunity to participate in the KCNQ2 Biorepository managed by COMBINEDBrain.

The event took place at a Sheraton hotel in Palo Alto, California. When Scotty Sims notified us that they were taking samples specifically for the KCNQ2 Cure Alliance and that we could use our CRID, we jumped at the opportunity! When the day came, we packed up the car and made the 3-hour drive down from Sacramento. It was the perfect week to jump at the chance!

“He Has Been Poked More Than Me!”

Our son Connor was almost 13 months old at the time, and he is a total trooper. When the phlebotomist asked if he had ever had blood drawn before, my husband joked, “He has been poked, jabbed, and pinched more than me!” The medical technician was fabulous. The blood draw was finished before Connor even noticed. We were also able to easily leave a fecal sample.

Turning a Research Day into a Family Memory

Was it a long day? Yes. But we made the absolute most of it! After finishing our donation, we took some time to relax, walk around, and explore Stanford University’s beautiful campus. To top it off, we enjoyed an oatmeal cookie in honor of National Oatmeal Cookie Day!

We are incredibly grateful to the KCNQ2 Cure Alliance for keeping our community updated on these vital research opportunities. If a study or collection event opens up near you, please consider signing up. It is a powerful way to do whatever we can to change the future for our kids.

~ Erica Anderson – KCNQ2 Mom