Over the last several years, we haven't shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn's Spinal Muscular Atrophy diagnosis. Throughout her SMA journey, we have always been conscious that we are but one family facing one devastating illness in a sea of many — fully aware that there are tens of thousands of families in desperate need of help.
The Affordable Care Act (ACA), passed by Congress in March 2010, is one of those previous injustices and we've been pretty outspoken about its necessary passage and positive impact on families like ours (seeour March 2010 blog post about what the passage of ACA meant to us, theSeptember 2010 New York Times article on Gwendolyn's story,and the January 2011 post/video about Gwendolyn's story that was shared on the floor of Congress). We feel passionately about the material pieces of the ACA and that the ACA is necessary for survival for our family and others in similar situations. It lifted a monumental and unjust stress from our shoulders. It removed the threat of financial ruin. It means Gwendolyn will have access to health insurance for her entire life. And we feel equally as passionate about fighting to make sure this legislation is not railroaded.
We were humbled when the Consumers Union, the nonprofit organization that publishesConsumer Reports (one of the top 10 circulation magazines in the United States), invited us to tell Gwendolyn's story and how the ACA has helped our family. The video they created is one of several stories that highlight the different type of people this legislation impacts. We are honored to be one of them and we hope other families facing critical illness will feel justly represented. These videos will be shown across the country and to members of Congress — and will, hopefully, help in protecting this important legislation.
For more information about the Affordable Care Act click HERE (and, yes, that is Gwendolyn's picture ).