Updates
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School, Careers, and Success in Life, Part 2
Second in a series. Read part one. No one really expected me to have a job. My advisors in high school didn’t like my ... Read more -
No Accessible Room at the Inn
I now know what it was like for Mary and Joseph when they were trying to find a room in Bethlehem. While we didn’t ... Read more -
A Spin on Accessibility: Wheeling Through a House of Oddities
In our free time together, my partner, Andy, and I enjoy adventuring. I’m not talking about the classic mammoth-sized endeavors represented by the swingin’ ... Read more -
Despite a Chaotic Family Schedule, I Feel Gratitude in the Midst of Stress
It’s been, as they say, a day. My parents bought an airplane hangar and are transferring it to our vacation home in Wisconsin. My ... Read more
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#AANAM – Spinraza Showing Long-term Benefits in All SMA Types, Biogen Says in Interview
Long-term results show Spinraza (nusinersen) is of unprecedented benefit to a broad range of spinal ... -
Feeling Grateful in Unexpected Ways
Do you ever have moments when a wave of gratitude hits you in the ... -
#AANAM – Zolgensma Showing ‘Strong Efficacy’ Across SMA Types, AveXis Says in Interview
With the U.S. Food and Drug Administration (FDA) expected to soon decide whether Zolgensma (onasemnogene ... -
Good Can Come from Things That Are Intrinsically Bad
Everyone with SMA has their own view of life with the condition, and for ... -
NICE Recommends Funding of Spinraza in England’s National Health System for all SMA Patients
Patients of all ages with spinal muscular atrophy (SMA) will now be able to ... -
Our Ignorant Bliss Is in the Past
Our old farmhouse has one bathroom and not much square footage. In the fall ...
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Researchers Discover Promising New Gene Therapy Approach for Spinal Muscular Atrophy
News
A new genetic approach to restore the expression of the gene that causes spinal muscular atrophy (SMA) in patients’ cells holds promise to effectively and permanently treat the disease, researchers suggest. The study, “Seamless genetic conversion of SMN2 ... Read more