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Meeting Congresswoman Capps

February 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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and..that IS the operative word here (your last line) "for the greater good of society" Again, good job Strongs - your hard work is so valuable.
Posted by Julie Brennan on 2011-02-01 17:20:07
Thank you for your work and tirelessly waging these battles while caring so well for little Gwendolyn.
Posted by gettyowl on 2011-02-01 17:58:06
Beautiful picture. Lois looks great. You are so blessed o have her in your corner carryinmg on all the work you do (which is amazing") --Mari
Posted by Mari on 2011-02-01 23:06:27
Many thanks to you (again/still!) for fast-forwarding awareness of SMA. In your quest to bring SMA to a screeching halt on behalf of your sweet Miss G, you have sparked so many others - inside and outside the SMA family - to join in. What you've accomplished directly and indirectly is simply amazing and MUCH appreciated. Remember that!!! Many thanks to Congresswoman Capps as well for recognizing such a worthy cause and your incredible efforts smile 'Lucy'
Posted by Helen on 2011-02-04 07:13:13

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