Bill Kurtis is from Chicago and he does still live here (part of the year anyway) and we see him around town from time to time. This past April he was the MC at the Run for the Cheetah 5K at the Lincoln Park Zoo. Of course, I assaulted him ... I mean introduced myself to him and gave him one of Liam's cards. I'm sure he forgot all about us, I can't be the first person to throw a cause in his face, but when we started planning the event we knew someone who knew someone who knew someone (about 10 more times) who knew him and he agreed to it even at a discount. I love a good sale so we snatched him up. Pat and Ryan will be there too, along with a few other families, so it should be a really good time. I'm just glad I get to dress like a grown up for a change.
Seriously, I think I left my brain in Disney. I may have even left it in Cincy last month ... UGH! Ryan was nice enough to give us the mailing list for WI and IL, you'd think I would have remembered you would be on said list. Don't pay too much attention to anything I say. I'm glad you're going to come, it should be a fun night. If you're planning on spending the night we got a good rate at the hotel too, just mention the event when you make you're reservation. I'm so excited!!!!
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.
Hi Gretchen. Thanks for your note. We are well - just completed home renovations (doorways widened, bathroom, kitchen). Glad to be done. So Nick is in the PTC study - I presume he is a stop codon then? How are you all? The study? What does it entail?
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 firstname.lastname@example.org let me know if you hear from Cincy.
Are you doing the half at Disneyland next month? What's next on the docket? I'll surely miss you if you go to the PF Chang in Phoenix instead of Orlando, but I understand your motives. When's your Beach to Beacon?
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!
I was so nice to hear you on my post. I think about you often. I am bummed I could not go to conference this year. We were on a vacation with my parents and sister, brother, etc. I will definitely be there next year. The year before that I was obviously busy with Bryce in the NICU. He is doing great in terms of growth. He is 15 months now and is 20 pounds. He is starting to close the gap a little. He is having some problems with seizures and circulation issues and is having some allergy testing today but nothing I can't handle. When you have DMD to deal with everything else pales (sp?) in comparison right?
That is awesome that Nick might get to be in the PTC trial. Do you see Dr. Wong anyway? I don't know that I knew that. When do you go again? Why don't you stay at my house next time instead of a hotel? That would be fun. I am only about 25 minutes from the hospital. Let me know I would love to see you.
Hey Gretchen! It was really good to see you in Philly. You have a picture posted with a sea lion ... is that at the Milwaukee zoo? The boys did the sea lion splash there last May and they loved it!!! It's such a cool zoo. Are you planning on coming in for the Chicago marathon again this year? I hope so but if not let's see if we can plan to get together sometime. Hope all is well ... Kristin
I wish we could have made the last two Philly conferences but scheduling and such has made it impossible. Would love to meet your hubby. I think we are in Atlanta next year so we should be able to make it. Sad to say that people in 2008 are just as uninformed and "stupid" as they were in 2006.
The heat is very draining. Some days it is 104. Even the occassional breeze is just hot! John is running in this weather. He is running anywhere from 6 to 18 miles a day. He runs very early in the morning, but it is still hot. We are headed to Colorado for a few days. I think our timing is pretty good. Cooler weather here we come!