January 22, 2021January 21, 2021

Welcome to ‘Wandering the Lines,’ Our Journey Into the Unknown

Columns, Wandering the Lines – a Column by Sherry Toh

“I wish I were normal,” I used to say to my mum. I told her this at other kids’ birthday parties, when they played musical chairs or went on ... Read more

January 22, 2021January 22, 2021

Better Ways of Capturing Progression in Types 2 and 3 Identified in Study

News

Four measures of motor ability — including one of continuous upper limb activity that can be done at the home — reliably detect significant functional changes over one or ... Read more

January 21, 2021January 19, 2021

Being My Own Health Advocate Kindles Multidimensional Healing

A Wildflower in the Wheelderness - a Column by Katie Napiwocki, Columns

When I say, “I don’t need my SMA to be fixed,” I mean it from the bottom of my heart.  Last month, I set sail with my first dose ... Read more

January 20, 2021January 20, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization ... Read more

January 20, 2021January 20, 2021

Cure SMA Booklet Outlines Possible Risks, Benefits of Combining Treatments

News

A free resource booklet, published by Cure SMA, may help people with spinal muscular atrophy (SMA) to better understand the possible risks and benefits of combining different treatments for the ... Read more

January 18, 2021January 15, 2021

In ‘Care Work,’ Grief Is the Garden of Our Dreams

Columns, The Wolf Finally Frees Itself - a column by Brianna Albers

Many, many weeks ago, I said I was going to read “Care Work: Dreaming Disability Justice” by Leah Lakshmi Piepzna-Samarasinha. In a month. Reader, I was wrong. I was ... Read more

January 18, 2021January 18, 2021

TOPAZ Trial Results on Muscle Therapy Likely by June, Scholar Rock Says

News

Efficacy and safety results from the TOPAZ Phase 2 trial evaluating apitegromab, a  muscle-directed therapy for spinal muscular atrophy (SMA) being developed by Scholar Rock, are expected by June, the ... Read more

January 15, 2021January 13, 2021

Advice From a Life Coach: Resolutions, Mindsets, and Emotions

Columns, From Where I Sit - a Column by Halsey Blocher

Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree in psychology. She uses ... Read more

January 15, 2021January 13, 2021

What I’ve Learned From Sharing Stories About My Life With SMA

Columns, Life, One Cup at a Time - a Column by Alyssa Silva

January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced ... Read more

January 15, 2021January 15, 2021

Online for 2021, Team Cure SMA Race Series Planning Variety of Events

News

The COVID-19 pandemic has forced many activities to be online only, but in the case of this year’s Team Cure SMA endurance race series, the limitation means more people ... Read more

January 14, 2021January 12, 2021

This Is ‘Soaring With Hope’ — Welcome Aboard!

Columns, Soaring With Hope – a Column by Ari Anderson

Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What ... Read more

January 13, 2021January 12, 2021

Another Farewell, a ‘Looth Tooth,’ and an Old-fashioned Snow Day

Columns, We're Not in Kansas Anymore - a Column by Helen Baldwin

Kudos and a whew! to us all for surviving 2020. Vastly understated, last year was memorable. Overall (and thankfully), my family managed to welcome the new year intact. However, ... Read more