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.
We are doing OK, thanks. Brian had his spinal fusion surgery in early June, and it was hard, but he recovered well in time to be back in school by the end of August. He has taken his SAT, and plans to apply for college by this time next year. We continue to live from day to day and pray a lot.
We are all doing well. Josh is home...from college....major issues with our OVR. They wouldn't help Josh with proper disability related needs which was a voice activated system for his cell phone ...instead they gave him a remote control landline system he literaly had to hold onto all nite....he got no sleep holding onto this remote ....then his nursing and aides were not showing up for his care. His health was at risk let alone waiting in bed 3 1/2 for someone to show up for his first day of class....with health at risk not having them show up for rejection meds. He wants to be independed....but cant put his health at risk...agencies are doing the same thing here...noone shows up and noone to send out sooo you go without...how he is to live on his on like this is beyond me but these agencies are ok with it... ug...His spirits are still wonderful...thank goodness...hope you dont mind my major venting...hope all is well with you and the family Julie...give us a call when you have time. Josh wants to start a foundation and some fundraising so he is working on that now. talk to you soon
My son has decided not to go to Advocacy Conf. in DC next year. I had hoped he would go and I would join him. The price of the hotel is so expensive and his sales have dropped greatly. Erin even had to go back to work so I don't want to pressure him. I needed him to go to share expenses. I'll do my part from Houston though. Hope you and Nick are having a good week.
Thanks for writing, Julie. I think it's great that PPMD has found a way to connect everyone -- there ought to be lots of oppotunities to break down the walls of social isolation that made a social life for our son, Peter, so difficult. Plus, on the research side, everyone can now be well informed and share experiences. Larry and I will always feel the strongest of bonds for the Duchenne community -- parents and children alike. All best to you, Mary-Lou
Hi Julie & Nicholas,
Great picture of the two of you and great story!! You are amazing and such a tireless supporter for Nick and all our boys. Thank you!!! PG&E sounds like a good company to work for and one that gives back to the community.
Thanks for the welcoming words. I can't believe it took me so long to find this site. What an awesome resource!
My son Liam was diagnosed a couple years ago and it has gone by in a blur, especially this last year. He is nearing the end of the phase 2b trial of PTC-124 and is expected to transition into the extension program next month. We've been traveling to the UC Davis Medical Center in Sac for the past year. Thank goodness we live relatively close.
I wish the best for your son Nick and the rest of your family. Perhaps we will run into each other in Sac sometime!
Just thinking about you and Nick tonight and wanted to pop in and say hi. We've been busy working on Coach to Cure MD lately. I go to rehab 3x week for my knee and it's slowly coming along. Hope all is good with you.
Hi Julie, Sorry I haven't been on here recently. I sort of set up the page and then forgot about it. Been too busy working and taking care of my son 15-1/2. Daughter is heading to San Jose State for college. we live in Torrance,(So California). Let me know how you are doing.
Hi, Julie. Sorry that I have not stayed in contact recently. I quit my job last fall after working 30 years. Grant needs someone to be home with him and we decided that should be me. This is the first summer I have not worked since I was 15. I am really enjoying the time but it is amazing how busy we stay. Feel free to contact me at firstname.lastname@example.org as I don't check this email very often. Did you go to the PPMD conference in Atlanta? We were thinking about it but then decided not to go. I hope all is going well for Nick and the whole family. Talk with you soon.