Dear colleagues, dear students and supporters of the Faculty of Architecture, BUT,

We would like to ask for your support for Nikušhka Bykova, the daughter of our excellent colleague, Alex Bykov. Nika has an extremely rare genetic disease SPG47 (spastic paraplegia type 47, caused by a biallelic mutation of the AP4B1 gene). So far, approximately 120 cases are known in the world. This disease is manifested by delayed psychomotor development, reduced muscle tone, speech disorders, epileptic seizures and a number of other complications.

Unfortunately, the disease has a progressive nature. Even children who manage to learn to walk or talk often gradually lose these abilities. Spasticity mainly affects the lower limbs and many children are later dependent on a wheelchair, walkers or alternative methods of communication.

Currently, there is a gene therapy for SPG47, and research into this disease has been underway in the USA since 2016. Despite the extremely small number of patients, the efforts of parents led to the creation of the Cure AP-4 Foundation. In collaboration with doctors and scientists from Boston Children's Hospital, the preclinical phase of research was successfully completed and the project received FDA approval for clinical trials.

You can donate or share the information here:

We will be grateful for every share and support you can show us. Thank you!

Sincerely,

Faculty of Architecture, BUT