A SPINRAZA UPDATE: TO BE CONTINUED

Right about now, I should be laying on the operating table. I should be clenching my mother’s hand and taking slow, meditative breaths as the surgeon carefully stings my lower back with precision. I should be listening to every click and every spin as a fluoroscopy machine rotates around my body. I should be receiving […]

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WHAT THE MOST SIMPLE, YET POWERFUL, ADVICE FROM MY DOCTOR TAUGHT ME

Emotional pain is like a summer storm. As you’re enjoying the warmth radiating from the sun, a dark cloud-covered sky arrives and indicates what’s about to come. Lightning strikes. Thunder claps. The earth shakes. And, you scramble to find shelter to keep yourself safe. Pain often works the same way. It’s unpredictable, damaging, and springs […]

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GUEST BLOGGER: FROM A NEWLY DIAGNOSED MOTHER

This month’s guest blogger comes from a mother whose son was diagnosed with SMA almost two years ago, Lynne Vaudry. Meet Evan! I am honored to write as a guest blogger for Alyssa. As a mother of a young child with Spinal Muscular Atrophy, I have learned so much and been inspired by Alyssa’s posts. […]

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GUEST BLOGGER: WHAT A LIFELONG FRIENDSHIP LOOKS LIKE

Last month, I introduced you to my very best friend, Amanda, in a post titled “To the Girl Who Picked Up My Pencil“. Amanda is a pretty remarkable girl and the type of friend everyone needs in their life. I’m extremely fortunate to call her my best friend. After receiving so many heartwarming messages on […]

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