This time of year is usually pretty busy for my family. Most year’s we are busy preparing to march in the 4th of July parade with Jon’s boy scout troop. Jon’s Boy Scout troop didn’t march in the parade and. Jon was focused on finishing his Eagle Scout project. Also this year the annual Parent Project Muscular Dystrophy conference and Shea Holbrooks racing and fundraising efforts all seemed to collide into the same couple of weeks.
Kat and I went to the Parent Project Muscular Dystrophy Annual conference in Denver. Kat was helping with the kids’ camp session at the PPMD conference and participated in the sibling panel. Kat had the younger boys during the kids’ session. Most of the boys were live wires. 18 boys on steroids to treat Duchenne; adding candy into the mix makes for an interesting day camp session. Kat made me laugh when she said “OK Mom, after 5 hours with these kids, I have decided not to have children” “I can’t imagine how any Mom with more than two kids deals with them?” That’s a decision my daughter will have to make, when she is ready! I hope it will be later rather than sooner. She still has a lot of life to live before having children. The sibling panel was very well received, Kat’s key point to parent’s with of Duchenne kids was to not take out your frustration regarding work, dealing with Duchenne etc. on your non-affected kids. They get the dynamic, but they are really just kids as well. I think any Duchenne sibling matures faster than other kids their age. I can honestly admit that through Kat’s high school years my household didn’t function really without her help. I was sitting in the audience; and was proud that she felt that she was able to express her view point so freely.
The conference always has a large amount of information to process and sift through. I am so glad that the presentations will be posted on Parent Project Muscular Dystrophy’s web-site www.parentprojectmd.org. I will be able to review the material and process it at my own pace. I don’t have a medical background, so I need time for the material to sync in. I can attribute Jon’s overall health to the information that I receive at the conference. After the research study results from Harvard regarding Protandim, we have decided to start Jon on that supplement as well. I was not an early adopter on this supplement because he was already taking other supplements, and there wasn’t any independent research regarding Protandim and Duchenne until the Harvard study.
I met with the PTC Therapeutics during a breakout session regarding Ataluren. Amanda Becker said it right. One father mentioned his son’s cardiac function dropped 20% after discontinuing Ataluren. While there is no data to confirm a direct relationship, stopping Ataluren was the only change to his son’s medications. As each person expressed their own experience with Ataluren and interest in participating in an access program, Amanda said that in her view any change, any loss of function and surely a change in the cardiac function constitutes an emergency. PTC’s medical officer had never thought of Duchenne in that way. Duchenne is an emergency. Given this new insight into Duchenne, PTC said that they would work on access and regulatory approval concurrently. Genzyme will continue to work with PTC for access and a path forward for European trial participants. This was positive news on all fronts. I’m in hurry up and wait mode to find out when we will be able to get access. This information will be provided after the meeting in Naples at the end of July.
I was inspired to hear Nick Dobes story during the awards dinner. Nick Dobes was awarded Weisman Fellowship this year. Nick was inspired to work in the Duchenne field by his best friend and roomate from college who has Duchenne. While he spoke about his friend and all the things they did in college. I was struck by the caring and very close friendship that he formed with his friend. As I look forward to Jon heading off to college and hope Jon is able to have such a friendship that will last after college and into their careers. Nick’s story was heartwarming and inspiring.
Another inspiring person is Shea Holbrook. Shea is rookie race car driver that is inspired to raise awareness for Duchenne Muscular Dystrophy and Parent Project Muscular Dystrophy because of her two cousins, Matthew and Jordan Klapp. (Matthew 1989 – 2008). Shea hopes to be the next Danica Patrick (Indy Cars). Jon and I went down to Watkins Glen on July 3 to watch Shea race. It was an exciting race to watch. Watkins Glen is known as a fast track to drive. We both enjoyed watching the race. Shea placed 8th in this racie despite having faulty brakes. You can check out her newsletter on the Watkins Glen race at www.shearacing.com The Watkins Glen race will be aired on Versus TV on July 17, 2010 from 11pm – midnight. Shea’s next race will through the streets of Toronto, Canada on July 17, 2010. We had a good time filming a TV spot that we hope will be aired on Versus.
I enjoyed watching Jon’s face as we watched the cars go around the track. He really enjoyed himself at the race. For me, it brought back memories of watching racing in Loudon NH with my big brother. He took me to see stock car racing, funny cars and dragsters. It was a thrilling treat for me as kid as my brother is 10 years older than I. I thought it was really awesome that he would let me hang out with him. When I was younger I wanted to be the next Shirley Muldowney. She was first lady of drag racing. However, it was not meant to be. As an adult I have resigned myself to driving between 75-80 mph on the thruway on my way to Buffalo listening to loud Rock and Roll. I just can’t drive 65. I guess that ‘s why I follow Shea Holbrook’s racing accomplishments.
As these past weeks continue into summer, I am so happy that I was able to attend the PPMD conference in Denver, and witness my daughter become a young woman. I am grateful to have met such inspiring people like Nick Dobes and Shea Holbrook.