gr8 to here from you -hope evryone is well-it seems i only go on this site a couple times a yr;but will try tocheck in more-we are up in the air re Baltimore but may book it toay-Colin called me on my cell phone yesterday and said he will be in NY  city before the conf. so i/we will try tohave that beer or two etc.and maybe another one in Baltimore,have fun in Seattle,we hope tosee you guys eventually  either on vacation or confrences etc. Be well Rich

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.

 

Colin

better late than never,obviously no Denver last yr, just went on this site 1st time in a long time-am contemplating Baltimore right now'how about you?hope all is well-Rich Poole

Hi Steve.  

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.)

LH

Are you going to Dnver conference this year, Suzanne and I are, just finalised all the bookings.

hi steve, i don't know because its' the last week of school for Spencer, that kept Nicole from going w/me to Atlanta last june,one of us may go,we really havn't talked about it yet. hope all is well

Hi there, just wanted to drop a note and say hello. There are so few of us that have two boys with DMD, especially in Canada, that i fear no one can totally relate. How did school begin? Here everything started on a positive note. Did you attend the PPMD conference? My husband and i are attending next year. Maybe i will put a posting in the Canada group, it would be nice if we could all meet each other.
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!!! :)

hi steve.hope you are ok.
please let me know how you are doing now.

Steve,
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!