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.

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!

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.