Just when I think life can’t get any busier…ok, let me just spit it out, we got a puppy!!!!!
Almost everyone I know looks at me like I am crazy, but I feel so fantastic about our new arrival. Charley and Maisy absolutely love her, and Sammy is finally getting used to having a dog around. Yes, I am busier than I ever thought humanly possible, but I have been on more walks in the past three weeks than I have been on in the last three years. And the smiles Stella has brought to Charley’s face are irreplaceable. It is definitely extremely difficult to balance our drive toward a treatment for DMD with taking the time to enjoy what we have now. Every minute that I am walking the dog or taking the kids for a swim (the proverbial “smelling the flowers”), there is definitely a shadow of guilt that I am not cultivating donors or checking in on scientists or updating the website. How can I not do every single thing possible to make sure we reach our goal in time to help Charley and so many other little boys who have such a real chance at a better future?
One answer to this dilemma is to get some help, and thank goodness we can do that. Friends are constantly calling in with fundraising ideas and hands-on help. This summer Charley’s Fund will host the bake sale at Egremont on Parade (July 27 at French Park in Egremont). We will also benefit from a very special concert featuring principal musicians of the NY Philhamronic on August 11 at a historic mansion in Lenox, MA. Both of these events are being handled by friends who stepped forward to offer their assistance. Also thanks the help of several close friends, we are developing a fantastic Charley’s Fund gift catalog that will feature hip new merchandise…it’ll be ready in time for the holiday season.
Charley is at day camp, in the loving and supportive hands of the Camp Eisner staff. Thanks to a daily regimen of supplements and stretching, he is hanging on very well while we aggressively push forward toward a treatment for DMD. We’ve begun to sort through our investments in the medical research, bringing a close to projects that do not seem to hold promise at this time and honing in on the therapies in development that are showing positive results in preclinical testing. We are in the process of updating the research page of our website so all of our supporters can keep track of our progress. I will let you know as soon as that is done.
Happy July 4 to everyone out there. May this Independence Day mark another year of independence for our country, and also for Charley and all of his DMD “brothers” who are holding on tight until we reach our goal.