Vee Lail's Comments

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At 8:30pm on February 3, 2011, Perlita & Gordy Hains said…
hey stranger - how have you been?  are you attending Balt. conference?  We are as it's on 2 hrs from home by car.  Have you made any decisions regarding accessible home? keep in touch   xoxo  perlita
At 2:04pm on July 30, 2010, Perlita & Gordy Hains said…
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:)

perlita
At 5:13pm on July 14, 2010, raman grover said…
Hi Vee,

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.

thanks and talk to you soon,

Raman
At 5:05pm on March 5, 2010, Marija Bucevska said…
Thank you Vee
At 5:01pm on December 5, 2008, Steve Beaulieu said…
Vee, we are coming back to Vancouver this Sunday - dec. 7th. We will be at Easter Seal Sunday night - We'll try to call you...

Hope to talk soon, Michelle
At 2:13am on October 15, 2008, brad stringer said…
Hi Vee and Kelly,

how did the US clinic visit go for you all?

Brad
At 9:39am on October 7, 2008, brad stringer said…
Hi Vee,
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- stringerimages@shaw.ca or call 604-728-3091
At 8:58pm on October 6, 2008, brad stringer said…
Hello Vee and Kelly...

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.
At 8:26pm on August 15, 2008, Angela said…
It was great hangin' out with you guys in SLC!!! I sure enjoyed finally meeting Kelly and Shaan. I look forward to talking often over then next few months!
Ang :)
At 11:48am on August 10, 2008, Jill Castle said…
How did it go? Email me and let me know. Jill@connectourkids.com
At 12:56am on August 8, 2008, Jill Keenan said…
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.
Jill
At 12:30am on August 1, 2008, Angela said…
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!

Ang & Jack :)
At 10:12am on July 23, 2008, Jill Castle said…
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
At 10:53am on July 22, 2008, Star Bobatooon said…
Thanks Vee! It was great meeting you as well. I will try to get some pics up soon. Take care and find the joy in everyday.
At 10:08pm on July 21, 2008, Kelli May said…
Hi Vee!
Great to see you this weekend. I always enjoy having the opportunity to chat with you, catch up, and vent, of course!
Kelli
At 1:40am on July 8, 2008, Robyn Hoffman said…
Hello Vee-
Richmond is not far from us in Kelowna- wow. There are a few families I have remained connected to but then, the years have been tough on others...
Robyn
At 3:13pm on June 8, 2008, Jill Keenan said…
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.
At 3:37am on June 7, 2008, Jill Keenan said…
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!
At 12:23am on June 7, 2008, Jill Keenan said…
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!

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