Hi Julie, Hope all is good with you. I just wanted to let you know that I finally spoke with Jill Castle from AZ a couple weeks ago. Jill was so helpful & she said I could call anytime. I can't thank you enought for hooking me up with her, she is awesome. Also, it's nice to know there is someone out there who understands what Francis & our family goes through regarding his Autism combined with his DMD. ~~ What was the name of that scientist you wanted me to speak with? ~~ Francis' new bedroom is finished all except for some furniture. When I get the photo done of the room I'll post it so you & everyone may see it. God Bless, Suzanne :)
Hi Julie! Long time no hear from, right? I love all your photos, especially the one with all the feet dangling from above! :)
Julie, I've been working on developing a resource for carriers of any genetic condition or predisposition. It is still in early stages and I hope to develop it further with input from others about what they would find helpful (scroll down to my first blog post there to see what I have in mind). The blog is at http://www.mybluegenome.com and I'm at http://twitter.com/mybluegenome.
If this is of interest, I would love to have you follow me at either or both!
YEs, I did get onto the Calif. site....we are well, my sone broke a bone in his foot and he has not been able to walk since. We try our best to encourage him ....but he says he can't even though the Doc. says he ahould be able to. We just encourage movement so we go in the pool almost every day.
How do I get on the California group?? It has been a while since I connected with folks on this site....things get tougher as this journey advances. My son broke a bone in his foot yesterday and it really worries me,
Hi Julie, My son is 16 with DMD/BMD we live in Southern California, but would like to communicate with you on care and other things. We will be up in Northern California-San Jose for a Regional Power Wheelchair Soccer Tournament March 5 -7th. Not sure how far that is to Sacramento. Thought maybe Nick would like to speak with my son, Taylor. I am not on this site much, but you can find Taylor or me on Facebook.
Our doctor here in Ottawa has a vibration therapy study ready to go but doesn't have funding yet. As soon as she does, Alex is in the study. Hoping for the new year. I'll let you know how it goes.
Hope all is well. Will you be at the conference this year?
Just dropping a quick note to see how things are going. I haven't been on the PPMD site in so long and it seems like it's growing like crazy! Just found Cathie Bullis, who also lives here in Davis. I hope to meet her at some point...she sounds like an amazing grandmother!
Hope all is well in your household. We're doing much better now that I was finally able to get rid of the flu bug...yuck! I'd love to catch up and see what I missed from the Dublin conference.