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Gwendolyn’s Story on the Floor of Congress Yesterday

January 07, 2011 by Bill Strong
Over the years we've been pretty outspoken about our experience with health insurance and our health insurance provider, Health Net (see past postshere,here,here,here, andhere), and our thoughts on the health care reform legislation that was passed in 2010 (see the article on our family in theNew York Times and our posthere). With the swearing in of the 112th Congress this week, the leading party in the House of Representatives has made it crystal clear that repealing this legislation is job #1 on their agenda. And they've wasted no time getting their gears in motion to make an early attempt -- regardless of the unlikely possibility of them actually accomplishing their goal.

No, we're not naive enough to think that the current legislation is perfect. But it does have tangible, positive impacts on several injustices that existed before its passing -- namely the abolishment of lifetime caps and pre-existing conditions. Both of these issues directly impact our family in a material way and reverting back to the old system would place us squarely back on the path marching toward financial ruin when we hit that lifetime cap on our health insurance policy -- making our family instantly uninsurable due to Gwendolyn's SMA or our pre-existing condition.

Yesterday Representative Lois Capps talked about Gwendolyn and our family's story (and even showed pictures of Gwendolyn on her new pony) on the floor of the House of Representatives as an example of the importance of this legislation. We are honored to lend our voice as a rebuttal to the attempt to repeal it. And we hope that those whom are fortunate enough to have health and are not faced with the brutal realities that we are, will hear the story of our family and the millions of other Americans in similar situations and understand that this legislation impacts real people, right now.

And, as always, we are super excited about the SMA awareness that comes along with it! Thank you Rep. Lois Capps for highlighting SMA and Gwendolyn's story on the House floor yesterday.

Click HERE to or on the image below to read the story...

Talk About It

Incredible! Your family is touching so many lives, I hope sometimes you let yourself sit back and feel truly proud of all you do-I know you are so good about thanking others for their help, I know it 'takes an army', but you are such incredible, positive leaders paving the way! Hugs, Em
Posted by Emma on 2011-01-07 08:49:45
[...] 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 [...]
Posted by Advocating for the Affordable Care Act: Gwendolyn's Story (Video) | Gwendolyn Strong on 2011-07-20 10:46:35
Strong Family....your journey with Gwendolyn is touching so many lives. Living with my SMA for 43 yrs, so many times I felt like I was in this battle alone....I now know that I am not alone. Thank you for sharing your precious little girl's life and thank you for fighting for Gwendolyn because as you fight for her, you are fighting for all of us with SMA. God Bless you all.
Posted by Tammy Duke on 2011-01-07 14:10:47
You are making such an impact on so many with your story. Lois Capps is an amzing women. I have had the pleasure of meeting Lois on many occasions on her trips to Berkeley, where her daughter Lisa lived. Lisa, and her family were our friends from church, and her death, from cancer, was so so sad for so many. Lois was there with Lisa and Nathen, and their two sons David and Wally through it all, and is everything you can imagine a mother to be. I can only imagine the passion with which she spoke of Gwendolyn. What a blessing to have Lois Capps in your corner fighting for you. We too worry a lot over medical caps. My husband has stage 4 metastisized colon cancer, and treatment costs are soaring. We think we have excellent insurance, but we also know we could reach the cap. We have a 3 million cap, and we're well over 1 million right now. When all this began we thought 3 million was a lot. 3 million is not looking like a lot today. While our medical cases have nothing to do with each other, I can't thank you enough for all you are doing and have engaged others to do to fight the fight. --Mari
Posted by Mari on 2011-01-08 14:10:43
If only there was a way to make the stupid Republicans see that the American people want national heath care. We were the only civilized country in the world that didn't have it. After all the work to get it passed, no matter how imperfect, now they want to go backward and repeal it for merely partisan reasons. As Nora Gooden's grandmother and for all the children with SMA I was so happy to see it passed so the children could continue to get the care they need. I thank you so much Bill, Victoria and Gwendolyn for speaking up and hopefully helping to keep the health care benefits in place. Much love to your family and all the SMA families.
Posted by MT Grandma on 2011-01-09 16:50:12

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