“What is SMA stand for and what is it?” This is the #1 question I am always asked whether Getty is with me or not. Often times I stand petrified not knowing exactly what I should say. Will I overwhelm them with too much information? Will I not give them enough? It has been a difficult challenge to find a good middle ground. But there is one aspect of SMA that I have found to be the best ice breaker in regards to having a relatable conversation with anyone on the street. “Have you heard of ALS? Well it is like the child version of ALS.” Once the letters ALS come streaming out of my mouth I find that most people create a relatable platform for us both to stand on.
We then go into some statistics and I offer all things Getty related and then it ends up being a pleasurable conversation. One in which I hope that person took away some new information for them to then pass along to another person.
I want to thank Leo’s Pride for putting together a great chart to help anyone interested to see how very similar SMA is to ALS.
Take a minute and you will see the commonalities of each diagnosis. So when I tell people SMA is the child version of ALS, I am really not that off. They both cause weakness in wasting away of voluntary muscles, including limbs, trunk, and muscles for swallowing, speech and breathing.
Both are devastating diagnosis. Both need a breakthrough therapy and/or cure. The clock is ticking.
Even though each unto themselves are different diagnosis, they each have the potential to help each other in regards to research. What helps ALS, has the potential to help SMA and vice versa.
The Ice Bucket Challenges have gone viral. I can’t check Facebook without someone taking a challenge to throw ice cold water over their head in honor of ALS. My hope is that with this challenge, with this new spotlight of ALS will also come a conversation about neuromuscular disorders. There are people behind these diagnosis and there are families fighting for their lives every day.
Educate yourselves on both ALS and SMA. Donate. Find a call to action to help in any way possible. A breakthrough is near, I do believe that and with this hope will come an answer for all of our loved ones.
Let’s keep talking. I know it is trendy to throw ice cold water onto your body, but let’s keep this conversation and sense of purpose going even after this viral participation has subsided. Let’s keep ALS and SMA on your tongue, then when you do talk about how you took the challenge, you can also infuse so many other neuromuscular disorders a healthy dose of recognition. I am partial to SMA myself.
Now go fill up some ice cold buckets and get to it.