Today is my 23rd dose of Spinraza (nusinersen)! 🥰 If I were in Germany or the US, I would likely be receiving the first dose of high-dose regimen (50 mg/5 mL). In my country, it is still not approved, and we are still waiting. We need high-dose Spinraza in Türkiye!

The congresses of @sma-europe.bsky.social create a uniquely unifying environment. Regardless of location, being among researchers, clinicians, and families who share the same mission fosters a strong sense of belonging and solidarity. This collective effort continues to drive progress.

Twenty years ago, at the very first congress of my life, one of the leading SMA neurologists, Dr. Swoboda examined us. Back then, the only thing I could say was a tiny “hello”. Exactly 20 years later, as a Neuroscience PhD candidate, I presented my poster to her at the 5th Int. Sci. Congress on SMA!

He’s an amazing person! I thank you from the bottom of my heart for all your efforts for the SMA community. We love you so much @tomgillingwater.bsky.social and we really hope to visit Edinburgh one day! ✨

As both a person living with SMA and a PhD candidate in Neuroscience, attending the 5th International Scientific Congress on Spinal Muscular Atrophy in Budapest, and presenting my poster there, has been a truly priceless experience.

Today marks the 22nd dose of Spinraza (nusinersen). Exactly 10 days ago, the EMA approved the high-dose of nusinersen. We are now hoping—and urging—our country to follow the EMA’s decision and approve and reimburse high-dose Spinraza as soon as possible.

I’m part of SMA in many ways — as a patient, a sister, and a PhD candidate. I'm in close contact with many SMA families and have long advocated for our rights and real awareness. I’m happy to be part of SMA Europe. I hope one day our slogan comes true — and no one is left behind.

SMA Europe@sma-europe.bsky.social · 9mo ago

Being a volunteer at SMA Europe means being part of a family built on care and trust. 💙 “No one is left behind.” — Ayça 🇹🇷 Thank you to our volunteers for your kindness and strength. Together, #WeAreOne 💫 #SMAEurope #Community #Inclusion #InternationalVolunteerDay

There are now three FDA-approved treatment options available for people with SMA of all ages! I’m looking forward to the EMA decisions on Itvisma, high-dose Spinraza, and Apitegromab. We’ll learn more in 2026!

SMA Europe@sma-europe.bsky.social · 10mo ago

Breaking News! 📣🧬 Today, Novartis announced that the company has received the FDA approval for Itvisma® (onasemnogene abeparvovec-brve. In Europe, the therapy is currently undergoing a Joint Clinical Assessment, with results expected in mid-2026 https://bit.ly/4pzd5Qb #spinalmuscularatrophy

Happy Spinraza Day with the 21st dose! Soon, we'll learn FDA's decisions on higher dose Spinraza and Apitegromab! Fingers crossed! 🍀🤞🏻

Here is the photo of the 20th dose of Spinraza! ❤

My giant gel and me. Hours of work, but it was worth it—the experiment worked! Sending lots of love to my trusty deltoid muscles; they've been putting in the work these past two days!

Here on BlueSky! 🌟 I’m a PhD candidate in Neuroscience. Spinal Muscular Atrophy (SMA) is both my scientific focus and personal experience, as my brother and I both have SMA. Eager to connect with researchers across fields—from genetics and neurology to patient-centered science and beyond.