I WILL HOLD YOU UP

SMA AWARENESS MONTH

I don’t stand up for a cause often enough—so I’m dedicating my August blog post to SPINAL MUSCULAR ATROPHY. It’s an insidious disease that has affected people I love, and it needs to be talked about.

Back in 2011, my band 7k recorded our final song, “I Will Hold You Up,” in honor of my friend Kennedy, who suffers from the disease. I’m thrilled to say Kennedy has defied all the odds and is still laughing and living and loving. First, the song, then some deets.

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WHAT IS SPINAL MUSCULAR ATROPHY?

SPINAL MUSCULAR ATROPHY is an inherited and often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. It’s the #1 genetic killer of children under two.

FACTS

• Two new-born children are affected by SMA each day in the United States, approximately 1 in 6,000 live births.
• 1 in 40 people (usually unknowingly) carries the gene that causes SMA, which means there are more than seven million carriers in the United States alone.
• If both parents are carriers of the gene that causes SMA, there is a 25% chance the baby will inherit the recessive gene from each parent and develop this disease.

WHAT NOW?

There is no cure for SMA—but there are two treatments very close to FDA approval, one of which just stopped its phase 3 infant trial to go straight to the FDA for approval.

HOW CAN I HELP?

Share this blog post, talk about SMA with your loved ones, and consider a donation to The Sophia’s Cure Foundation.