Today was International Clinical Trials Day (not that I needed to remind anyone -- our Target started decorating for it after Valentine's Day). Our family obviously has a vested interest in the different clinical trials for Rett Syndrome treatments going on around the country, as each of them present an exciting research and testing avenue for Zoe and girls like her. However, when we hear that phrase, we think of one specific trial and one specific team, first and foremost.
Last month, we took Zoe down to Rush for her semi-annual visit to the regional Natural History Study. We've been making this trip with her twice a year, dating back to just after we got her diagnosis. It's provided an introduction to many other Rett families, whose friendships we've come to treasure. The study has also helped us form a wonderful relationship with a research team from Children's Hospital in Boston. Every six months for the last four years, we've gone down to Rush to meet with the same team, who are dedicated to finding a cure for Rett Syndrome. They've measured Zoe, taken her temperature, annoyed her on some days, but most importantly, gotten to know her and us. We hope through this whole process (which includes meeting with a hundred or so girls and their families in the span of a weekend), they've learned a lot about this awful condition. We know that we, in turn, have gotten invaluable insight into the work they're doing, as are their colleagues from Baylor University, Alabama-Birmingham, and Greenwood Research, who join them for the trip.
Sadly, this was the last time the teams will travel here for the foreseeable future. The study is being rearchitected to shift the data collection responsibilities to a local research team at Rush. This will save the research study funds in the short term and allow these teams to focus on their work in their home facilities. Each team is incredible, but we are partial to the Boston team that has been our constant, Dr. Kaufman and Kate Barnes, who are managing a very promising clinical trial, yet in its early phases. They are studying the impact that insulin-like growth factor (IGF-1) can have in strengthening the nerve synapses that have never had the chance to function in girls with Rett Syndrome, as well as people with numerous other neurological conditions like it.
Since this was our last trip to meet with them, we brought our older daughter Hannah with us for the first time in these four years. She had always been curious what these visits entailed (and why she'd been excluded from them; she didn't realize it was to shield her from the monotony of a four-hour hospital visit). About a week after our visit, she told me she wanted to invent a kind of medicine that Zoe and her Rett friends can drink to make the condition go away. I told her that was a wonderful idea. My wife and I had always told Hannah she can do whatever she wants in life. I didn't have the heart to tell her that this was probably the one thing in life she wouldn't be able to do, as much as it would mean to her. I know that Miss Kate and Dr. Kaufman, Zoe's great team of friends in Boston, are going to beat Hannah to the punch.
Good luck to them and to all the other research teams. We'll miss you, and we'll see you soon. We hope we helped.
