Photo courtesy of Seda Karakaya Day 20 of 31 This is Seda Karakaya’s (@lifebeyondmywheels) story: Hey! This is Seda from Turkey. I’m a 24-year-old college girl with SMA type 2 who studies two majors at two different universities. Nope, one wasn’t enough for me. I guess I like…
Photo courtesy of Bryarly Parker Day 19 of 31 This is Bryarly Parker’s (@movingmountainsformightymax) story: Max was diagnosed with SMA type 2 on Nov. 24, 2020, in Alberta, Canada, when he was 22 months old. We realized something was wrong when he stopped weight-bearing, was barely moving…
Photo courtesy of Noelle Hazel Day 18 of 31 This is Noelle Hazel’s (@noellegrace14) story: Hi! My name is Noelle, and I have SMA type 2. I have a brother who has the same disease type. Growing up with a sibling who is disabled has truly helped me…
Photo courtesy of Sarbjot Kaur Day 17 of 31 This is Sarbjot Kaur’s story: Mehtab, whose name means moonlight, is our cheerful, adorable, and compassionate 4-year-old son. He loves playing with superheroes, dinosaurs, and Legos — his favorites are Black Panther, Batman, and T. rex. After numerous visits to…
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
Photo courtesy of Hanna Eide Day 16 of 31 This is Hanna Eide’s story: My name is Hanna, and I’m a digital artist. I use Adobe Photoshop to do my artwork, using images from the internet that are labeled for reuse and modification. I sell my artwork through my…
Photo courtesy of Jacob Frost Day 15 of 31 This is Jacob Frost’s story: I have SMA type 3. I started using a wheelchair in elementary school. Thanks to supportive family and parents, I never believed my disease controlled my life or limited my potential. I dreamed of…
Photo courtesy of Joe Frost Day 14 of 31 This is Joe Frost’s story: Life with a disability is much akin to playing a game on insane mode, due to the lack of access to resources, services, and sites. Yet, for all the challenges, there are a few benefits.
Photo courtesy of Pia Noi Schmid Day 13 of 31 This is Pia Noi Schmid’s (@pianschmid) story: I’m Pia Noi Schmid. “Noi” is my middle name — it means “little” in Thai. Cute, isn’t it? When I was 2 years old, I was diagnosed with SMA type 2.
Photo courtesy of Tristram Peters Day 12 of 31 This is Tristram Peters’ (@tristrampeters) story: When I was younger, I tried to hide my disability. I’d push myself to do everything my peers did, to show my disability didn’t matter. I’d even choose not to wear my tray/table…
