LAM-111 is a structural protien that restores muscle adhesion in boys with DMD. You can find out more on our website, www.prothelia.com. With funding and regulatory support, we are focusing on clinical trials in 2-3 years. I wish it was sooner for both our children.
hi karen, austin and max are at the adaptive ski program at the double h ranch in lake luzerne ny in those pics. we went for the first time last year and loved it. we will be there again in a few weeks. i didn't ski then but my husband did...it is the same camp they go to for disabled children every summer it is the best place ever! you can also do adaptive skiing at almost every big mountain, here in vermont at least.
We will definitely have a team at the Flying Pig this year! I am finalizing the registration page and will have it up and running soon - hopefully by the end of the week! I will email you all when it is ready.
The kids started school her last Wed. Seems to be going well for Derek at the high school. Even though we started the process for his power chair in Feb. we still do not have it. Hopefully by the end of next month. So we had to change plans. He was going to go on the bus but since he didn't have his chair his scooter doesn't fit on the bus. We did buy a accessible van last month and we are able to hook the scooter in there. So Kevin takes him and picks him up every day. He seems to be doing ok. My biggest worry was lunch. I was worried he would be alone but his best friend who is a grade above ended up being in his lunch so that is ok. Did Scott go into ninth grade? Derek was hoping to get together. Are you guys going to the telethon at all? We'll (or at least me for sure) will be there from 12 to 3.
If you happen to have any pictures, please feel free to send them to me and I will add them to our site! We have had a lot of checks still trickling into the office which is great. I will send everyone a note around the end of the month with our grand total. I do know that we have made well over $12,000!!!! We just can't thank you all enough for all of your hard work!
Have a great day :)
I watched for you all on yesterday! I saw one of your teammates at the 4 mile mark. I was waiving my pom poms like crazy, but I don't think he saw me! We watched for you all at the finish as well. I was hoping we would see you at the expo. We had to pack up at 5pm on Saturday to make it to the dinner later that evening. If you took any pictures, please send them to me. Thank you all so much for putting in the miles. I will send an email in the next few weeks letting everyone know what our grand total was. Please send any remaining donations to the NJ office. Again - thank you so much!
Hi Karen, we live in Columbus and I am interested in talking with other moms as well. will your son be going to summer camp this year? My son Cody will be going for the first time. Talk to you soon, Jennifer
I just read your post on the one topic I started. On this board there is a lot of wondering around you have to do. Thanks for your response. Derek is good. He just recently asked about Scott and wondered what happened to us getting together. I said we should get together before camp. I almost have the application finished. That thing is so long.
Have you been going to the yearly PPMD conferences? We haven't gone since Cincy that one year. Wont be going this year.
Sorry I haven't responded to your comment sooner, things have been kind of hectic around here. Hope Scott is doing ok. Kyle and Travis are fine. We've had colds and Rusty had pneumonia and Kyle had mono but everyone is finally feeling better. We're just waiting for warm weather and summer. Take care.
Your idea about getting the boys together sound like a good one. Kyle is 12 and Travis is 8. They both love football, video games, and movies also. Just let us know what you have planned and where.
Hello Karen! Beverly is about 2 hours south of Columbus and 4 hours from Cinncinnati. Yes we were at the Make-A-Wish walk at Easton and I think I remeber meeting you. Kyle has been on prednisone for about 1-12/ years now. He is having some trouble walking and gets tired easily. Travis is just now starting to have some trouble. The doctor wanted him to start prednisone in August, but he can't swallow a pill and refuses to take it any other way. We have good days and bad days. How is your son?
Hi! I know you don't know me but I was just reading the deletion forum and saw your post from August 8. My nephew Brogan has the same deletion as your son. Exons 38-43 he was diagnosed at the end of last year at four years old. He just turned 5 in May. How is your son doing?