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.
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.)
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!!! :)
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!
Hi Steve and Michelle: I love the new pictures that you have added to your album. It's great to be on the site and enjoy all your family pictures. Sure hope Ross is managing better with his broken leg and that Finn is feeling better, also. Miss you all so much and looking forward to coming for Ross' graduation. Love and Hugs,
Grandma and Grandpa.
you guys are probably sick of it but we're finally getting some snow and cold weather, i love the snow-it gives us something to do w/ the kids.Delaney actually said she wants to do a snow angel,have no idea how she knows what it is except maybe from tv,she tried one the other day in a frozen pile aprrox. only 1 foot/ 1/3 of a meter (are you metric up there?) I had to tell her we need more snow and loose stuff. i made a ice rink 4 the kids + me of course in the back yard ~20' x40' Spencer was on it yesterday w/a friend but wasn't thick enough 4 me/had to shovel it today and there was a lot of cracking noises,so I stopped halfway done. stay well, i'll call you guys one evening,but am having trouble finding your # from the past. if you don't mind e-mail it ? firstname.lastname@example.org
prepáč že odpovedám po tak dlhej dobe.
Dufam že tvoj prekladač preloží aj slovenčinu.
Mam dvoch synov ale zatiaľ je diagnostikovaný len Danny. Samuel má 3 mesiace a pretože boli komplikácie pri pôrode nemôžme ešte vykonať test. Čakáme a dúfame že bude v poriadku. Danny ma diagnózu DMD zistenú od 9 mesiaca života a od tej doby sa zaoberám všetkým čo s tým súvisí. Ak by si sa viacej zaujímal o život na slovensku a o našu rodinu rád sa s tebou o to podelím.
A čo ty a tvoja rodina vydím že máš troch chlapcov ako ste na tom vy ten tretí je zdravý?
PS. som rád že môžem písať vo svojom jazyku, pretože od malička sa nerád učím jazyky
Thank in pretty very commend photo and wish have a nice day in new of the year 2009.
Pardon the my English no is good but I oneself has yet only teach your language. Livings with family on Slovak who be about central Europe. Am I gladly as he get in contact too from parent by other land because everywhere is the other access et al know - how in the fight with the DMD. My son Daniel (4,5 r) is due to DMD type of point mutation at Samuela(3 mon) has yet dunno surely what will be. Compete against fortune to all what he'll ride. At leisure work for Slovak organization muscular dystrophia where I am co - ordinator parent groups of DUCHENNE ACTIVE CROWD www.duchenne-ac.wbl.sk .
from honour and gratitude
Zdenek „ Andy" Haviernik
hi there,wow ,it sounds like you guys had our sort of "luck" this last year,lets hope for a great 2009 and 4 some miracles/breakthroughs w/dmd...love your pictures I hope to learn how to put some up,Nicole just left 4 work and her b'day is 2/22.Spencer Delaney and I of course are pack'n now to go to our place upsate NY since Nicole's work'n and there's no school for a day or 2.gotta go and give them breakfast now . Happy new year -Rich and family
Thanks for the offer of some of your weather, I have one comment and it is not " Yes please... "
I trust you had a great Christmas celebration and that 2009 will be a good year for everyone. The global financial crisis has not hit here yet, but I suspect it will have its impact in the year ahead. I look at them as a % of opportunities are now limited, but life goes on and there is still some finance to live on.
I was wondering how it must be to live in such extreem climates. The things we take forgranted and the huge effort to do anything else except stay indoors and try to keep warm. I would definitly have a home on the equator for the winter months.
Anyway, take care and best wishes to the family
hi guys ,if u don't add me as a friend i'll slip on my undersized running shoes and make my way up to you guys and force you to....Miss u guys.lovedmeeting you and all in Disney..We are skipping it this year,i have too many injuries,i ran only once since jan12?? hope to not sound too corny but my nail just finished growing back in the last couple weeks,sorry 4 not being in touch but we've been quite chaotic,i just got around to joining this and have my very own email address 4 the 1st time email@example.com did u guys do NY city in nov.? have a merry Christmas..Rich ps i don't type much
Hi Michelle and Steve: Got your message on my page. We are leaving for a vacation on the mayan riviera on Sunday morning and will be gone for one week so won't be here when you arrive. Hope all well with all of you. Let's talk soon.
Hi Steve and Michelle: Love your page and all the pictures. You even have one with Shaan in it, probably from the airport! I don't even remember you taking it. How are you all doing? Call me sometime--I'd love to chat. Are Finn's stomach issues now settled? It was great seeing you at the Vancouver round table.