Advocating for the Affordable Care Act: Gwendolyn’s Story (Video)

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 (see our March 2010 blog post about what the passage of ACA meant to us, the September 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 publishes Consumer 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 :)).

About Bill Strong

Passionately dedicated to raising awareness of Spinal Muscular Atrophy (SMA), the leading genetic killer of young children, and accelerating promising research towards a cure. Together we will end SMA: one person and one dollar at a time.


  1. You are such an incredible, inspiring family.

  2. Great job! Thank you for your advocacy!

  3. Marcela says:

    Good job!!!

  4. Gramma Strong says:

    GREAT, GREAT JOB STRONG FAMILY!!! Let’s hope this lame duck Congress listens!!!!

  5. Megan and Justin morseth says:

    Go Strong family!!!

  6. Parvaneh Givi says:

    Thank you guys so much for being a strong (no pun intended) voice for affordable health care. This legislation affects so many people, and I can’t think of two more eloquent and wonderful people to be out advocating and educating.

  7. Jennifer Calafiore says:

    Awesome job on awarenes of SMA and what it takes to live day to day with it. It’s not fair for insurance to bail when there is a medical need. That’s why we purchase it in the first place. Thanks for advocating for all us families.

  8. Ann Walker says:

    Please tell us how we may make a difference. Should we be getting signatures? Should we write letters? For so many I lOve this is a critical issue. How do we keep working insured insured?

    No family should have to pick and choose between treatment, medicine therapy because there is a cap on theirinsurace.

    Please tell us how to best support theACA.

    Thank youin advance!
    Ann walker

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