Last updated on July 24, 2020
We are just driving home from a whirlwind two days in Boston where we attended our first Cure AP-4 conference. We connected with AP-4 disorder families in person, and met researchers and doctors working on gene replacement therapy and drug therapy treatment options for AP-4 disorder patients.
Most the of the families at the conference we connected with online and communicated with via What’s App regularly, but we also met another family who has two sons with SPG52 just like Dante and they’re the first family we know of that lives in the US! So now there are 11 known cases of SPG52 in Europe and 3 in the US.
I’m still processing everything from this weekend but it was amazing! Dante got to meet other kids just like him and play with them. We had opportunities to compare stories with other parents who for once finally know exactly what we’ve been going through and talk to researchers who are working day and night to help find a cure and treatment options for our amazing kids!
More info to come!