Spinal Muscular Atrophy

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The Mighty Staff
 • 
Spinal Muscular Atrophy
June 20, 2023

The Mighty's Spinal Muscular Atrophy (SMA) Condition Guide

NewSpinal Muscular Atrophy (SMA) at a Glance: Spinal muscular atrophy (SMA) is a rare neuromuscular condition that causes degeneration of spinal motor neurons, or the signals from the brain to muscles, resulting in muscle weakness.  SMA is usually diagnosed in the first few years of life when children are unable to achieve motor milestones as [...]
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Jacob sitting in his chair with his Mom posing next to him in front of a Christmas tree
Jacob sitting in his chair with his Mom posing next to him in front of a Christmas tree
Lori Butierries
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Spinal Muscular Atrophy
December 8, 2022

When Our Family Found the Holiday Spirit During a Hospital Visit

My son, Jacob, had a pre-op appointment in late November in preparation for his December lumbar puncture (LP) procedure to receive SPINRAZA (i.e., a medication that slows down the degenerative progression of his primary condition, spinal muscular atrophy) and back tattoo to notate the injection site for future lumbar punctures. Before seeing the physician, he [...]
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Contributor's son, smiling and wearing sunglasses while laying on cushion on swing
Contributor's son, smiling and wearing sunglasses while laying on cushion on swing
Brittney Mosher
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Spinal Muscular Atrophy
December 1, 2022

The Hardest Part of Parenting a Child With a Rare Disorder

“I know it’s hard.” I’ve heard that before and again recently the other day in regards to my son. Or my life or life with my son, I guess. I feel like I’ve been far too busy gaslighting myself into being strong that I sometimes forget that day by day, I’m living in an unimaginably [...]
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Holding Jacob in my lap
Holding Jacob in my lap
Lori Butierries
 • 
Spinal Muscular Atrophy
August 24, 2022

What I Didn't Know Before My Son With Spinal Muscular Atrophy Had Spinal Surgery

I didn’t know that I wouldn’t be able to pick you up again. I didn’t know that your body wouldn’t bend. I didn’t know that my upper arm strength was so weak. I didn’t know that spinal surgery would change everything, not just the shape of your frame. I didn’t know it would be the [...]
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Mother pushing son in wheelchair as daughter walks beside them.
Mother pushing son in wheelchair as daughter walks beside them.
Lori Butierries
 • 
Spinal Muscular Atrophy
April 19, 2022

To the Family and Friends Who Offer Support as I Parent Kids With Disabilities

Dear Friend, Thank you. Thank you for accepting me as the hurting and flawed human that I am. Thank you for not making me feel like a social pariah or treating me like I’m cursed because I have disabled children. Thank you for offering help without making me have to beg you for it. Thank you [...]
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Kurt Beach
 • 
Spinal Muscular Atrophy

An Unforgettable Moment from the Sidelines: My SMA Journey

Growing up in Indiana, my twin brother and I were athletes who spent countless hours on baseball diamonds, basketball courts and golf links. I thought I was in decent shape, until I started struggling on my runs and during the back nine holes of golf tournaments. My first instinct was to question my physical conditioning. [...]
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Angela and her husband
Angela and her husband
Angela Wrigglesworth
 • 
Spinal Muscular Atrophy

Finding New Hope: Living, Learning and Teaching with SMA

Teaching highly-energetic elementary school students is not the easiest job; but to me, it’s the best job. The kids I teach are curious, intelligent and helpful, so when I explain that I have spinal muscular atrophy (SMA) at the beginning of each new school year, it creates an amazing bond between the students and me. [...]
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"Born for Business" poster featuring entrepreneurs with disabilities.
"Born for Business" poster featuring entrepreneurs with disabilities.
Lauren Appelbaum
 • 
Disability
August 12, 2021

'Born for Business' Shines a Spotlight on Disabled Entrepreneurs

Docuseries from the Emmy Award-winning creators of “Born This Way,” Bunim/Murray Productions, as well as Shopify Studios, begins streaming on Peacock and CRAVE on August 23 A powerful docuseries that spotlights the untold stories of four entrepreneurs with disabilities, “Born for Business” gives viewers an insider’s look at what it takes to launch and run [...]
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Joslynn & her family posing for a photo
Joslynn & her family posing for a photo
Joslynn Jones McLaughlin
 • 
Spinal Muscular Atrophy

My Unexpected Journey: Raising Two Girls With Spinal Muscular Atrophy

In 2013, I accepted a position to teach college English in China. I moved my then-12-year-old son halfway around the world on a temporary, fun adventure. Just weeks after arriving, I began volunteering at an orphanage and my heart quickly started to connect to the children I was taking care of – one in particular, [...]
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