Christine good's Comments

Comment Wall (27 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 6:06pm on January 21, 2009, Karen Barnett said…
Hi Christine,
My son Daniel also has a deletion of exon 51. He will be 8 yrs old on Feb. 15th.
Karen
At 10:00am on January 16, 2009, Tracy said…
Hi Chirstine,

Charley also has a deletion of exon 51. He is 8 yrs old. Your son is a cutie. How old was he when he was diagnosed? -- Tracy
At 8:55pm on January 15, 2009, Ofelia Marin said…
Christine,

Skipping exon 50 will make an in-frame mutation for your son. Good new is that AVI Biopharma works on skipping 50, they received $2.4 M from Charley's Fund to go to clinical trials with that -- Charley also has a deletion of exon 51. They are using the best possible morpholino (PPMO) for skipping 50; this was proven effective on the heart as well as skeletal muscle in mice.

http://www.avibio.com/pr/pr354.php

Ofelia
At 8:48pm on January 5, 2009, Darcy Tumminello said…
Christine,

I just wanted to make sure you saw the follow up regarding the letter to the insurance company from Amy.

Thanks
Darcy
Christians Mom
At 11:27am on January 3, 2009, Sheila Cheetham said…
Hi Christine,
this is a great blog.
Love, Mom
At 8:14pm on November 9, 2008, Leah stevens said…
no our ins does not pay for any of it we pay all out of pocket, right now our md dr geung at shriners childrens hospital
At 7:59pm on November 9, 2008, Leah stevens said…
dezi has no side effects from the deflazacort no we did not try the pred first. well the problem with canada is you will have to see a dr in canada. i get deflazacort from mastersmarketing.com you will have to have a perscription from your doctor to get it. i have not had any problems getting the deflazacort i pay debeit online dezi has been on it for 3 years, dezi's is 12 and is still walking i dont know if you have heard of COQ10 but it helps the boys with dmd i saw a difference in dezi when he started on it, it is over the counter you might want to look into that to. im in spokane washington, if there is anything else you want to know or if you just need someone to talk to, or info on meds and resources ill be here to help you in any way i can leah

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service