I am elated to finally be installed in our new house for so many reasons. First of all, I can now get back to my main job, which is raising money for Charley’s Fund. With almost all of the house-related decisions behind us, a good part of my day is freed up to focus on raising funds. I’ve even become somewhat adept at getting the word out on Facebook, despite my initial aversion to that platform. Speaking of Facebook, Benjy and I are hosting a contest in honor of our upcoming 40th birthdays to see who can collect more birthday donations for Charley’s Fund!
Learn more about this friendly competition.
Check out my Facebook birthday wish…and help me beat out Benjy by making a donation toward my wish!
If you want to join the fray but you don’t “do Facebook” (and believe me, I understand that decision), please make a donation via our website in honor of one of our birthdays. On Mar 31 we’ll announce the winner for most donations as well as biggest total collected.
Back to the house…It’s a huge relief to have more space so the kids (and Benjy and me) aren’t in each other’s faces 24-7. Sam, Charley and Maisy are thrilled to have their own rooms. I love and adore my extra deep bathtub. But when you live with DMD, it’s a fact of life that even the most joyous occasions are tinged with sadness. So while we sit in our new living room looking out the huge windows onto the most beautiful meadow and forest beyond, there is a subdued quality to the experience. We do feel lucky to have this incredible place. But no matter how good it feels to be there, there’s always the awareness that we needed this house for Charley because he has DMD and DMD is aggressive and progressive and horrid. While we did a great job of making the house subtly fully accessible, DMD is still very much there with us all the time. A visitor might not notice that the doorways are all extra wide or that the shower in the boys’ bathroom has no threshold or that the light switches are all lower than they would be in a typical house. But for us, those details are all stark reminders that one day our son may need those accommodations because he has DMD and then the reality of DMD is on our minds again.
It is highly encouraging that we are moving so quickly to develop new treatments. With our new program Pilot Trials Now, we are pushing forward FDA approved drugs that are ready to be tried in clinical trials for DMD boys. The first trial will begin this year at Johns Hopkins/Kennedy Krieger institute with sildenafil, a Pfizer drug that was developed for hypertension and angina. Animal testing indicates that sildenafil may significantly help the hearts of boys with DMD, so we are hopeful and excited to get this trial off the ground. Clinical trials are not cheap, so we are grateful to have support for this one from the Nash Avery Foundation, Cure Duchenne, and Hope for Javier — three other foundations run by parents of children with DMD.
Our other research collaborations are moving along too, and we remain confident that a treatment will be developed in time to help Charley. If the next five years are as productive and fruitful as the last five years, we will be in VERY good shape. Of course we need your help to make that happen, so please stick with us as we continue to push forward with every fiber of our being.