Posted on July 26, 2008 at 12:00am
2008 marked my third PPMD conference, my second in Philly with hubby Brian. I can't begin to share how impressed I was with the progress of the presentations. Each speaker seemed aware of what had been said the year before, and seemed focused on sharing where they hoped to be next year.
I'm amazed at how much of a family the PPMD community is. I didn't introduce myself to everyone to whom I nodded (a personality flaw I blame squarely on my father) but I feel a camaraderie with my… Continue
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I'm sorry we didn't meet up at the pasta dinner, but we are from Chicago. Snow never holds us back. Oh yeah, and we drive everywhere we go. 2 days in the car with 4 boys was fine on the way down but on the way home I think I would rather have gotten a root canal. Hope you guys are all staying warm!
I'm sorry we missed you in Disney, we were there but I didn't see you. Did you do the half or the full? I did the half (a perfectly ridiculous distance in my opinion) and John did the full. He'd obviously taken leave of his senses when he decided that was a good idea. He did well though, finishing in 4:23 and show off that he is he hit Animal Kingdom afterward.
I'm so excited to see you're planning on coming to Liam's fundraiser! It's going to be a really great night and we have a lot of people working on it. I did neglect to mention dress and ticket prices in my post. It is black tie optional and at $250 each I think the tickets are really expensive. I would love it if you are still able to come but please don't feel obligated. I really feel like an idiot for forgetting to mention that not so little detail. Anyway, I hope you had a blast in Disney (who doesn't right?!) and that all is well with you. Give me a call sometime so we can chat, we live close enough that we should be able to see each other more than once a year.
We are doing okay. We will probably be starting Josh on steroids soon and we are going to see Dr. Wong in April. Josh's doctor's have us a little frustrated so we decided to go see the best!! How's your family? I hope well. Yes, we will be going to Disney again this year. We will be bringing the kids. We are heading down on the 6th and leaving the 14th. We actually have a team this year other than Stan and I. We have a total of 6 and Stan ran New York again this year for PPMD. We look forward to seeing you and catching up!!
Tim will start the PTC next Friday. He had the muscle biopsy last week and so next week we go back to Cinn for the medicine. I too am very hopeful but almost too scared to hope too much. Good luck when you go to Cinn in October. I think the arm has been much easier to recover from than the foot biopsy was for Tim. He did not even take a tylenol. Let me know if you have any questions about what to expect.
I'm also still waiting to hear when Chance can start.I'm not sure if he will be in 2a or 2b. We live about 2 &1/2 hrs. from Cincinnati. When we were there in June for check-ups they said he would probably start around Sept./Oct. Chance and Nick look like they are on the same stage of DMD (Dam Muscle Disease). My email is email@example.com let me know if you hear from Cincy.
Do you have a stop codon? or another mutation.
I am going to Disneyland...just two weeks away! I am registered for Disney World. Rachel wants to run the Half again and PF Chang's is later on the calendar, so it looks like that will be where we go...this year. I ran the B2B a couple of weeks ago and I was having heel pain. I didn't finish as well as I wanted. I did see Bill Rogers who is recovering from cancer. He also ran and I managed to stay ahead of him. How has your running been? Any races this summer? I hope all is well and best to your family!
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