Earlier this week our family and our foundation was publicly attacked on facebook by another SMA family who run their own foundation in a note they titled “Glass Houses.” While the specific allegations are beyond ridiculous, the action of bringing this slander to a public forum created enormous hurt and destruction for our family and for a lot of people in the SMA community. We have struggled with how to handle this as we have no desire to incite more pointless, childish, destructive rhetoric.But it has become clear that as a family and as a disease community we need some serious healing and we hope we can all find a way to move productively forward and beyond this.
The truth is, we have felt bullied for months and this recent childish and baseless note on facebook created unnecessary added stress for our family and for many other SMA families when ALL of us have the very real stress of SMA which needs our immediate, 24/7 attention. We are still scratching our heads as to what the intentions of such a note could possibly have been and believe it did nothing but cause destruction in an already fragile, sensitive community. One thing is certain — in no way did any of this benefit SMA. In fact, this type of inappropriate behavior only takes all of our eyes off the ball and diverts us from the important task at hand. But, we can't vote anyone off this island — whether we like it or not, we are all stuck on this SMA island together — which means we need to reflect, regroup, and figure out a way to coexist and operate in a civil manner. So, can we do that?
As so many mentioned in the comments to the “Glass Houses” note — there are absolutely no sides — we are all on the same team. We think — with the exception of attacking or tearing down others — that every effort in the SMA community has enormous value. Whether it be inspiring a song or making videos or running a race or putting on a conference or pounding the pavement on Capitol Hill or coordinating research with the NIH or trying to give yourself or your child the best life possible — IT ALL MATTERS!!! Are we all going to like everything everybody does? Probably not. Are we all going to support everything everybody does? Probably not. But there is nothing positive about trying to create divisiveness. There is nothing to be gained by trying to tear any organization or family down. Rather, each of us should be focusing our energy and strengths on continuing to build on the incredible momentum that has been built by the SMA community over the last 20+ years in awareness, research, and support. We should allstop worrying about what others are doing or not doing — that includes us, that includes the family who wrote the “Glass Houses” note, that includes all SMA organizations and families. And the truth is, even after being publicly attacked, we truly hope the family responsible and their foundation raise millions of dollars and help end this awful disease — in a positive, productive manner. Because THAT is what is truly important. We just hope they stop trying to destroy others in the process.
We're moving forward and beyond this. There is so much positivity to be focusing on in our own lives and within the SMA community. Rather than dwell on the negativity of the past several days, we're going to continue to let the people we are, the way we live our lives, the things we've accomplished, and the people we surround ourselves with speak for themselves. In the end, that's all that really matters…