A Big New Chapter

This fall brought a pretty big milestone for our family:

Beckett started kindergarten!

After everything he has been through, moments like this never feel small. We are incredibly proud of how hard he continues to work and so grateful for the teachers, therapists, medical team, family and friends who continue to cheer him on.

Beckett continues his regular therapies and IVIG treatments while doing what he does best: keeping us laughing, being silly with his sister, and finding every opportunity to play sports. He has been especially loving basketball lately and is always happiest when he has a ball in his hands! We also had the incredible opportunity to meet the Dominican Stars volleyball team, and Beckett is now officially a member of the team. Having another group of athletes in his corner cheering him on has already been so special.

As we head into the fall and winter months, we’ll continue following Beckett’s medical protocol and taking things one day at a time. Our plan is for him to transition to homebound schooling after Thanksgiving through the winter months, helping us limit illness exposure during the height of cold and flu season. We’ll keep celebrating every bit of progress along the way and are so grateful to have all of you cheering him on.

Research Update

Spotlight on trainee scientists working to understand ANE.

Hannah Bazick, PhD, is a postdoctoral fellow in Dr. Erica Davis’s lab at the Ann & Robert H. Lurie Children’s Hospital of Chicago. Hannah’s goal is to better understand why ANE can cause such severe brain injury and to develop tools that can ultimately help researchers find better treatments. Her publications can be found here.

Before joining Dr. Davis’s lab in April 2026, Hannah spent years studying rare neurological diseases and learning how genetic changes can affect the brain and nervous system. During her post-baccalaureate, graduate and postdoctoral training, in the labs of Dr. Lucia Notterpek and Dr. Mark Zylka, she studied rare conditions including Charcot-Marie-Tooth disease and Angelman syndrome. She learned how to use laboratory and animal models to understand what goes wrong in cells and how those changes might be corrected. This experience has prepared her to study ANE, where an underlying genetic susceptibility may combine with an infection to trigger devastating brain injury.

Hannah’s work in the Davis lab is focused on building something the ANE research community urgently needs: reliable laboratory and animal models that can help scientists understand the disease and explore possible treatments. This includes models of ANE associated with the T585M change in the RANBP2 gene. Because ANE is so rare, researchers have had very limited opportunities to study what happens in the brain during the disease. Creating these models will allow scientists to ask important questions that cannot be answered simply by studying affected children. Hannah’s work will address why an infection can lead to severe brain injury in some people, and what happens to the brain’s nerve cells and other cells during disease progression.

Most importantly, these models will give researchers a way to begin testing potential treatments. Hannah is bringing together genetics, cell biology, neuroscience, and laboratory models to better understand ANE and make meaningful progress for families. Every step toward understanding ANE matters. The support and partnership of families and the ANE community make this research possible. It helps move us closer to a future in which families facing ANE have more answers, more treatment options, and more hope.

Beckett’s Beehive Block Party

Sunday, June 13, 2027 | 1–4 PM
River Forest, Illinois

What started as an idea around our kitchen table is quickly turning into something so much bigger. On Sunday, June 13, 2027, from 1–4 PM, we’ll be hosting the first Beckett’s Beehive Block Party right here in River Forest, all to raise funds for ANE research at Lurie Children’s.

We’ve already been overwhelmed by how many friends, families, local businesses, and organizations have stepped up to be part of it. We’re planning an afternoon filled with bounce houses, games, crafts, music, food and treats, raffles, and lots of fun for the kids.

For our family, this day is about more than throwing a great block party. It’s a way to take everything our family has been through and turn it into something hopeful, bringing our community together while helping move ANE research forward for Beckett and other children affected by this rare disease.

We’re still welcoming sponsors, raffle donations, in-kind support, and community partners, and we can’t wait to share more of the amazing people and businesses helping make this day possible.

For now, save the date: June 13, 2027. We hope to see so many of you there!