Hero Next Door Contest

What does the word hero mean? According to several dictionary definitions it means some of the following: Courageous, brave, selfless, the will to try. I am also adding “inspirational actions and deeds.” Following these definitions, I have no difficulty in nominating the Strong family, Bill, Victoria and Gwendolyn, for the “Hero Next Door” award. They are all of the above.

Bill and Victoria’s precious daughter, Gwendolyn, was born perfectly healthy. When she was six months old she was diagnosed as having Spinal Muscular Atrophy, Type I, or SMA. Although not a household word, SMA is the number one killer of infants. Bill and Victoria had not heard of it and you probably haven’t either. They did not know they were both carriers of the gene that creates this terminal disease. None of us did. SMA is a lot like Lou Gerig’s disease but in infants. Although babies are born healthy, SMA affects the ability to move, swallow and breathe. Currently there is no treatment or cure for SMA and most babies die before their second birthday.

Because there are no words to describe a diagnosis of SMA, I will not try. Being told by doctors to take Gwendolyn home and simply love her was not a treatment option for Bill and Victoria. Instead, Bill and Victoria took more aggressive action by seeking out SMA experts around the country and immediately took steps to prolong and enrich Gwendolyn’s life. Because of their actions, Gwendolyn just celebrated her second birthday. So how does all of this make Bill, Victoria and Gwendolyn heroes? Once aware of Gwendolyn’s diagnosis, Bill and Victoria chose a very positive course of action; not only with regard to Gwendolyn and her care but with regard to the disease as well. They decided to defeat this disease, raise much needed funds for research, and to do all they could within their power to increase awareness.

Infants and children with SMA require 24/7 non-stop care. But even with that responsibility, Bill and Victoria have accomplished an enormous amount. Just months after Gwendolyn’s diagnosis, they rolled up their sleeves and got involved in making a difference. They created an online petition, www.PetitiontoCureSMA.com, as a grassroots campaign encouraging Congress to pass the SMA Acceleration Act, rallying over 80,000 supporters, and launched EndSMA.org/Twitter, their “Tweet for a Cure” Web application reaching nearly 2 million people. Both Petition to Cure and Tweet for a Cure increased awareness of SMA and support for SMA research on Capitol Hill.

They established the Gwendolyn Strong Foundation, a non-profit public charity seeking to elevate awareness of SMA and increase funding for cure focused SMA research. They executed or were humbled as friends of GSF executed several fundraisers, raising nearly $200,000 from thousands of donors. They created the Unite for the Cure campaign as a way of collaborating with and motivating other families impacted by SMA to collectively raise $100,000 for a groundbreaking SMA research program headed to clinical trial. And they also partnered with over 800 online merchants willing to donate a percentage of sales to GSF simply by beginning your online shopping with ShopToEndSMA.com. They have had 25 articles written about them and have been asked to participate in 8 television and radio interviews. They have made several targeted grants and donations to research programs and organizations that have the very real potential to accelerate a cure for SMA. And just as importantly, the Strong family has become an inspiration to and a leader for thousands of SMA families nationwide in their effort to push for better and more effective care options for their daughter and other children with SMA and their effort to end this cruel disease.

It has taken courage to follow this path. It has taken immense strength and determination. It has often meant placing their goal of raising awareness of SMA before personal needs. And it has meant being remarkably brave knowing that the steps they are taking may not benefit their own daughter but taking the steps anyway. And through all of this, the real inspiration has been their precious little fighter, Gwendolyn, who continues to fight her disease with a smile and a twinkle in her eye that forever tells us, she understands and is so appreciative of all that her parents have done and are doing to help her and all the other infants and children, now and in the future, fight this ugly disease and someday, end it forever!

It is with humbled pride that I am nominating the Strong family, Bill, Victoria and Gwendolyn, for the “Hero Next Door” award. They are my hero and have become a hero to so many whom they have touched both in and out of the SMA community.

Nominee's Link: http://www.thepetitionsite.com/182/petition-to-cure-SMA

vote for Victoria