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Dan Temple is a patient advocate for those with Spinal Muscular Atrophy (SMA) and he shares his treatment journey and actions he has taken to raise awareness about SMA.  We also talk about the drug treatments that have come onto the scene since he was first diagnosed when Dan was 2 years old.  He is now 49.

Dan says, "Like I said, very important was that my lung function improved. I probably gained about ten years back from what I lost. I'm still on a feeding tube, but I couldn't eat by mouth for seven years, and the drugs helped my muscles start working better. So I can eat and drink by mouth a little bit. I don't do it a lot, but it's nice to be able to do it occasionally and have some food that I enjoy. And my hand, of course. The one finger I have is kept pretty strong. Thank God because if I lose that, I've got nothing."

"In general, it's kept me from getting worse, and when the drugs came along, I was at the point health-wise where I probably didn't have a lot of time left. My lungs were getting so weak that I was going to have to be on a respirator soon. So, basically, the Spinraza and Evrysdi both saved my life and gave me another 20 years, probably."

#SMA #SpinalMuscularAtrophy #RareDisease #Evrysdi #Spinraza #MDA #MuscularDystrophyAssociation #PatientAdvocate #Genentech #Biogen #SMAAwarenessMonth