We're Running For Danny
I am running the Disney World half marathon again this year to support Parent Project Muscular Dystrophy. This is the fourteenth year in a row that our family will participate, and I am really excited to be running with Abbie, Nick and Ben. This has been a tough year for our Duchenne family - we have lost a number of boys in Sam's peer group, including the sons of three of my current and former fellow board members. All of those hurt, but the toughest loss for our family was Danny Garofalo - Danny was 16 and we have been friends with the Garofalo family almost since Day 1. Danny had cardiac complications and lost his battle with Duchenne just after our entire family went to New Jersey to see him over the July 4th weekend. So this year, instead of running for Team Sam, our family is running for Team Danny.
Sam continues to do well overall. He no longer runs and he needs help to get up from the floor, but he is still able to walk at home without assistance and although he has had some cardiac complications this year, generally his hear health is pretty good. He has managed the transition to using an electric wheelchair at school really well. He still has a great attitude, and I am proud that he has adopted the philosophy that he will accept that things he can't change and change the things he can. Given all of the things that Sam has to deal with, he is really one of the lucky kids when it comes to the Duchenne community.
Parent Project Muscular Dystrophy was founded so that all kids with Duchenne MD could grow up and live happy productive lives. PPMD has identified the most promising research prospects, with a focus on helping the current generation of boys lead longer more rewarding lives. There has been a lot of progress in the last couple of years, with the first FDA approved treatment for a small component of boys with Duchenne, along with the approval of a steroid that had previously only been available outside the US. There are other treatments in various stages of development that I believe will definitely help Sam, but it will continue to take our time and effort to get those across the finish line.
Donating through this site is simple, fast and totally secure - just click on the Donate Now tab to the right. If you want to send in a check instead, we ask that you mail it directly to our house, with a notation that it is in Sam Killian's honor. Thank you for your support -- and don't forget to forward this to anyone who you think might want to make a donation as well. Your donation to Parent Project Muscular Dystrophy is 100% tax deductible. Mail checks made out to Parent Project Muscular Dystrophy (PPMD) to:
953 Stevens Road
Rockwall, Texas 75032
You can find more information about Parent Project Muscular Dystrophy at join.parentprojectmd.org
John, Stefanie, Abbie, Nick, Ben, Sam and Sophie