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Started this discussion. Last reply by Nick Grande Oct 12, 2010. 26 Replies 0 Favorites
Posted on January 6, 2012 at 5:55pm 1 Comment 0 Favorites
PPMD Run for our Sons Whitehorse Trail Marathon and half marathon Aug. 2012!! Please sign up and run the world famous Yukon /Klondike trail Marathon in 2012. Hike the famous Chilcoot trail from Skagway Alaska over the White Pass into Historic Log Cabin BC Canada!!
Posted on December 18, 2008 at 2:41pm 10 Comments 0 Favorites
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I ahve just seen the post on Richards wall, sending you both a message hoping you get to Baltimore. I read something about far??? How does 16 hours of flying non stopp dsound to you, so I am sure we can agree you should nip over to the USA and join the conference again.
Thanks for the note. A group of our wonderful supporters had a r&r team last year. I'm unsure if they are part of it again this year. I'll check with them. Regardless, i will also check our family calendar to see if we'll be around that weekend. Due to a torn achilles that is still healing (i'm up to 1 mile, though), I'm not able to physically participate. We'd love to othewise support the effort. Off to DC saturday for OneVoice and lobbying! Let's lick this disease! (BTW, my profile might be a little unclear. i have two boys - one of which has dmd.)
If i can ask you how your wife is doing? I find as being the carrier female, there are alot of emotions and responsibilities there. Just curious to know how she copes. Anyway, now i am just blabbing, guess just like to keep in touch with those who truly understand. We are heading to Florida in the winter, planning on taking the boys to a Dr who specializes in DMD, suppost to be very informative. Take care!!! :)
please let me know how you are doing now.
I don't believe we have met, but I look forward to meeting you and your family soon! To answer your question, CoQ10 is recommended by some physicians and suggested to provide benefit to the heart. Maintaining consistent levels in the blood is sometimes difficult and depends on the brand to some extent. Dr. Brenda Wong recommends 2 specific brands, though I am not sure of those names. Idebenone is a synthetic version of CoQ10. Because it is a synthetic version, it is more stable in the bloodstream. Santhera pharmaceuticals is involved in clinical trials with Idebenone (dmd – Belgium) and is working to get it approved in the US. I believe it is currently approved for use in Canada. I would suggest you discuss the various CoQ10 options with your sons' physician to determine the best treatment for them. Please let me know if there is anything else we can do to help!
Have a great day!
Grandma and Grandpa.
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