August is SMA awareness month. It has been amazing to see the things people have done to bring awareness of the disease!
Late in July I had written a letter responding to an article about rare genetic diseases in The New Yorker magazine. The letter briefly described SMA and our experience with the disease; it was nice that it was published in August since it is SMA Awareness Month.
By the end of the month the ALS Ice Bucket Challenge had caught fire and raised $50,000,000 for research and treatment of this disease (also called Lou Gehrig’s Disease). It is the adult form of SMA and the two diseases are closely related. Many in the SMA community took the Ice Bucket challenge, but also attempted to gain awareness of SMA by initiating a Smash SMA pie-in-the-face Challenge. Our family participated and challenged others. Rick lay in a truck bed filled with ice water for a few minutes, using a scuba tank to breathe, to make his points that the diseases leave their victims frozen and forced to rely on life support. A video of this can be found on Youtube by searching “Rick Hall ice bucket challenge.”
On the 23rd of the month Rick and I took Heidi to Mimi Yu’s SMA fundraiser in Raleigh. Mimi’s son has Type 2 SMA. It was a nice, successful event with SMA families and local newscasters present!
All in all, it’s been a successful month for SMA awareness, and at a time when treatments are finally in the foreseeable future!