New Year New Things

It’s been a while! First of all, the last month of 2023 was very busy. We travelled to NYC to visit the today show and Hoda, then we made our way up to Boston for an appointment at Boston Children’s to check in with our geneticist there and get some symptom data collection going. Frances had some struggles with myoclonic seizures ramping up but it seemed to subside with the addition of another medication at night. We finally made it into OHSU for an overnight EEG that didn’t really show anything definitive. Meaning nothing was caught in that time that was considered a seizure. It could be the new meds working, her growing or just the timing. Either way, we should take it as a positive that none were seen in sleep and throughout the day. We also had the amazing opportunity to meet Mel Dixon and family who are Cure Dhdds Uk. It was amazing to see the kids interact like they’d always known each other. Lots is moving forward with research and we are making new connections all over the place. Often learning about things in the moment, feeling very out of my depth but pushing through regardless. Thank you all who supported us in the last month or two as we continue to raise awareness and create possible treatments that go beyond anti seizure meds. Perhaps we will see you somewhere on the road as John and I travel across the country once more. We will be advocating as we go (hoping for more articles, interviews and opportunities to discuss) and bringing along new merch that also supports all things Frances and Dhdds. Hope to see you out there!