Vee - thanks for the kind words. I am happy to answer ques or guide you in any way I can. Basically NO STEPS, wide doorways, pocket doors, elevator closet area (we aren't installing now as Levi is only 3), but having the area structurally ready for elevator! My brother in law is an Architect in Washington DC and designed the home for us. contact me anytime:)
hi, how are you, yes i did find deflazacort, thanks for asking.
i guess it is a coincidence that our son's name are almost the same. It was nice to meet you at the meeting, i felt really comfortable talking to you. I hope one day we introduce ours children to each other, that will be great. I will love to come and visit you in Vancouver one day for the holidays.
I hope their trip goes well. just wondering...what can you tell me about the phase 2a extension study procedure, as I am wondering what will happen if we decide to participate in the 2b trial and then the 2b extension study. What is the follow-up that will be required in terms of tests, and for how long? any idea?
Also, please feel free to email me when you would like to discuss PPMD Canada and how I can help you and Kelly with setting up.
Best, Brad- firstname.lastname@example.org or call 604-728-3091
It was good to meet you both this past Saturday at BC Childrens for the PPMD Round Table. The speakers were all outstanding and it was nice to connect with a few local family members too.
Oh yes, the Indian food at lunch was outstanding!
As I promised, I want to talk with you as you start up PPMD Canada and see where I might be of use. Please let me know when we can "sit down" and discuss how I can join your efforts.
Regards, Brad Stringer...North Van.
Vee!! It was so great to meet you in person at the conference! I am so glad you saw me--and honestly, I had just been thinking about you and wondering how the ppmd canada thing was going and if you were at the conference!! I must say how impressed I am that you have taken on that challenge! My husband just told me that the deal he is working on will either be in Mexico City or Vancouver, so...if it is in BC around the time your "debut" happens in Oct. I will try and come. I would love to come and show my support for what you are doing.
Anyway, just wanted to say hello and nice to meet ya! Talk to you later and maybe I will see you soon.
We are looking forward to seeing you and Shaan in Utah on the 12th. We are here now, but headed home tomorrow afternoon. Drop me an email with any questions you might have. Take care, travel safe and see ya' soon!
It was so comforting getting to know you better. I'm glad we are in this together. We leave Sunday so let's speak after our screening and I can give you the scoop on what to expect the 11th. I am much more centerted this week so hopefully once it's over I can start focusing on gratitude. My cell number is 480-734-4339
Under your picture (or for me what should be my pic:) it should say and have a link to "change my photo or theme." Just click on it and you can choose different preset backgrounds and I think you can even customize it even more with different colors and maybe even add your own background--but I like to keep things simple. Too many choices mess with my ability to choose:) Good luck! I'll have to check your page out when you upgrade it.
Stanley Park--it was on the tip of my tongue but just couldn't remember it! That is way too bad about the hollow tree--we have some great pics of it at least!
Kudos to you for starting Parent Project Canada!! That is a big undertaking--the Canadian DMD community will definitely benefit from your hard work! Hopefully some of those who join the "Canadian Families" will be able to give you lots of support, i.e. help in starting and maintaining your organization!! Good luck! I love that there is an organization established just for B/DMD. Gotta love the MDA but thank goodness for PPMD! Where would we be w/out it?? Pat Furlong is a true hero, as well as anyone else who helped her efforts!
Welcome to this site! I think there are quite a few Canadians here, so you won't be alone!! My grandmother "in-law" lived in Richmond for years! We visited her there a few times and loved it--love Vancouver!! Beautiful part of the country! We visited a beautiful park in Vancouver that had the most interesting tree--it was HUGE but hollow. You could stand inside the trunk of the tree. My girls had a blast playing inside the tree.
I see you joined the stop codon group. Is your son participating in the trial? It is so exciting to think that a real treatment is so close for that segment of boys!! Such hope and promise for them, which will help pave the way for other treatments for the rest of the boys!! How grateful I am that our sons are living in a time of real hope. Let's pray all goes well with PTC 124 and all the other trials.
My husband and I keep saying if anything ever happens to our insurance coverage here, we will just head back to Calgary where his family is so we can have good coverage. Have you been able to find good care in Richmond--Dr's, PT's, etc.? If it is anything like here, there are vast differences in what one doctor thinks to the next, unless they are a true specialist. Then I believe they are more or less on the same page, so to speak. Of course each will have their own way of doing things and ideas on different things, as is true with any doctor, right? We are traveling from Texas to Ohio to see Dr. Wong, but were lucky to get great referrals locally for PT, OT and hippotherapy. How is the support there in general? What sort of organizations are in place there for the DMD community? Does the MDA have a big presence there? What about PPMD? Sorry for all the ?'s, just curious as to the differences/similarities in different countries. Look forward to getting to know you and yours through this site!