We will never forget the day the doctor told us Ben had SMA. Our entire world was turned upside down. They told us to go home and love our baby because he wasn’t going to live very long. The doctors explained exactly how SMA would impact him and that he probably have weeks to months to live. Well, I am happy to say that our little Rockstar just turned 1! He is defying the odds and proving the doctors wrong every day!
Since receiving Ben’s diagnosis we have made a commitment to do whatever we can to help find a cure. We feel very passionate about Dr. Kasper’s gene therapy program. Out of all the programs out there, it is the one that appears to have the most potential. Gene therapy is in a critical stage and needs funding to bring it to human clinical trials.
In our efforts to fund research, we have formed a racing team called Team Ben. The team is made up of racers of all levels from their first 5k to marathoners to triathletes raising money to cure SMA. Our primary goal for 2011 is to raise as much money as we can to support the research that is being done at Ohio State University. Team Ben has committed to raising $10,000 and we know we can make this happen!!