Meeting Congresswoman CappsFebruary 01, 2011 by Victoria Strong
Today we met with Congresswoman Lois Capps at her Santa Barbara office. We have met with, emailed, and spoken with her Health Aides many times before, but we have never actually met Representative Capps. The first thing you should know is that she is really super nice. (I found myself wanting to invite her over for lunch.) But more importantly, we are so grateful that she cares about and champions issues that impact families like ours.
I must confess that I went a bit blank on my usual SMA shpeel because the Congesswoman kept thanking us for being such advocates. And when her Health Aide said, "There isn't a legislator in Washington who doesn't know your daughter's name, picture, and story," well I truly didn't know what to say...and I got a little vaklimped. I certainly wish Gwendolyn were being talked about because she is simply marvelous instead of because she has SMA, but I am moved and honored that our beautiful little girl can shed some light on the brutal reality of SMA and the issues that we -- and countless families -- now face.
Since Gwendolyn's diagnosis, we have been involved with helping garner support for the SMA Treatment Acceleration Act, Health Care Reform, and any issue that SMA has opened our eyes to -- or, perhaps I should say, slapped us in the face with. I suppose it is our way of coping. But there is also an element of the sheer injustice of it all that motivates us to be a productive part of the solution. And thanks to the hard work and compassion of people like Representative Capps, some of these things are changing and that gives me courage.
We so appreciate that Congresswoman Capps is sharing our story and crusading for so many on the Hill. We are honored to be developing a deeper relationship with her and we look forward to continuing to work together on issues that need changing -- for the greater good of society.
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