Ayça Şahin Email & Phone Number

Doing Ph.D. in Neuroscience, studying Spinal Muscular Atrophy (SMA) as well as fighting with SMA:My brother and I were both diagnosed with SMA when we were little. At that time, SMA had no treatments, and the only thing we could do was to prevent the disease progression as much as we could. For years, we did everything, followed the scientific improvements, did physiotherapy, went to doctor appointments, and waited for treatments... No matter what we did, since SMA is a neurodegenerative disease, it progressed, but I believe we managed to make the progression slower. At that time, I decided to study genetics and become a scientist who gives people hope and I worked hard for that. I started to study Molecular Biology and Genetics at university. During the first years of my university, the first SMA treatment, Spinraza (Nusinersen), was approved by the FDA and subsequently EMA. We, as all SMA families and our SMA organization (SMA Benimle Yürü), worked hard to make Nusinersen available under the scope of our national insurance, and we succeeded. My brother and I have been treated since 2019, along with hundreds of SMA patients in Turkey. We both noticed many improvements and regained some lost abilities. About our fight with SMA and our improvements with treatment, many photos and videos exist on the Instagram account of my mother, which was created for us: username is "ayca_burak_annesi"I obtained my BSc from the Molecular Biology and Genetics department at Koç University, and now I am a Ph.D. student in Neuroscience at Koç University. I am no longer just an SMA patient; I am also studying SMA because my doctoral thesis focuses on SMA.