I may be queen of my kitchen, but I enjoy cooking together
“What are we making for dinner today?” my friend asks as we head to my kitchen. I love when she says “we,” because she knows I like to be an active participant in this process.
Columns
My whirlwind adventure of getting lost in Singapore
“Time for your whirlwind 20s, babe!” When my best friend and fellow SMA News Today columnist, Brianna Albers, said that a month ago, I couldn’t have imagined how much I would feel her words. She’d said it…
My whirlwind adventure of getting lost in Singapore
“Time for your whirlwind 20s, babe!” When my best friend and fellow SMA News Today columnist, Brianna Albers, said that a month ago, I couldn’t have imagined how much I would feel her words. She’d said it…
New SMA awareness campaign aims to link research, patient needs
Called “Connecting the Dots,” a new awareness campaign from SMA Europe is highlighting the importance of transdisciplinary and breakthrough research in spinal muscular atrophy (SMA). The nonprofit umbrella organization behind the initiative, comprised of…
How a simple page turn became a big victory
As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm. However, my hands and…
Expert shares knowledge of surgery for SMA-related scoliosis
Spinal surgery is often a major consideration for children and teens with spinal muscular atrophy (SMA) who develop scoliosis, a complication that can affect comfort, posture, and breathing. To better understand this step in SMA care, SMA News…
‘Call Me’: What the Labor Day MDA telethon taught me about advocacy
What comes to mind when you think of Labor Day? For some people, it might mean a cookout, a day trip to the lake, or a last, desperate dip in the swimming pool. For me,…
Spinraza helps restore key amino acid imbalance in severe SMA
Spinraza (nusinersen) helps correct a key amino acid deficiency in people with a severe form of spinal muscular atrophy (SMA), a study has found. Researchers found that the treatment restores levels of L-arginine, an amino…
A celebration of breakthroughs, mine and my parents’
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where…