Medication/Supplement Journals
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Advocacy: Get Active!
Posted by Ryan Fischer on January 5, 2012 at 2:00pm 0 Comments 0 Favorites
With deficit reduction remaining a top priority in Congress and a $1.2 trillion spending reduction on the horizon, 2012 will be a critical year to protect Duchenne research and public health priorities. For this to happen, we need your voice on Capitol Hill now more than ever before. Whether that be by joining us in Washington at the Annual Advocacy Conference or advocating from home by contacting…
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Latest Activity
Andrea Cleary replied to Tulika's discussion 'One year on Phase 2 of GSX/Prosensa Trial'
Only one antisense drug has ever been approved by the FDA, and it is injected into the eye where it has it's action.
Myozyme is an enzyme, it's not playing with people's (our kids) genetics.
Andrea Cleary replied to Tulika's discussion 'One year on Phase 2 of GSX/Prosensa Trial'
Hello All,
Don't forget that we have no clue if this "new dystrophin" produced will continue to be produced (over 2 or 3 years, we just haven't had this around long enough, it's new), whether it causes longer term problems…
Amrit replied to Tulika's discussion 'One year on Phase 2 of GSX/Prosensa Trial'
During the extension period, do you still have to go to the clinic once a week to get the injection? Thanks.
Tulika replied to Tulika's discussion 'One year on Phase 2 of GSX/Prosensa Trial'
Let us consider a hypothetical situation that after exon skipping has demonstrated that certain % of dystrophin is being produced but not helping the kids. How many of us will be eager to jump to get the kids enrolled into the next exon skipping…
Lynn Bartels commented on Katherine M. Reynoldson's group 'Washington & Pacific Northwest Families'
Hello I was just wondering what is the research
Night?
Lynn
Janelle Hester commented on Katherine M. Reynoldson's group 'Washington & Pacific Northwest Families'
Hey Judy, just heard from Stan Froehner and the meeting is April 12th. Thank you so much for always helping to put this all together! I am hoping that we will see many of you there. I always feel like we need a little more time to…
David replied to Tulika's discussion 'One year on Phase 2 of GSX/Prosensa Trial'
While I don't wish to descend into despair, I for one have zero confidence in western biopharma to help this generation of boys, for the exact reason Ofelia states - they are just too slow. Years to assess data on a few dozen boys? Years to…
Cheryl Hartwig commented on Katherine M. Reynoldson's group 'Washington & Pacific Northwest Families'
Hi Lynn!
A Christmas get together sounds wonderful. We live near Ruth and Jeni so I don't see a problem. If you need any help organizing let me know.
Oh, the weather was so bad last week, we where snowed in for a week!
Donna Cicardo replied to maxine Strydom's discussion 'IDEBENONE'
Hi Govind, My son also takes alot of vitamins and minerals and his medications. at first it seemed like a lot but like Ruth said, you kind of get in a routine. recently after my son was taking idebenone for 6 months and his…
Ruth Le Gal replied to maxine Strydom's discussion 'IDEBENONE'
Hi Govind, We give our son creatine and hemp protein (it contains a natural balance of all the amino acids). My son takes quite a few supplements as well as vitamins and minerals but once you get into a routine it doesn't seem…
Manoj Nag commented on Nimi Langer's group 'Diet to lower CPK'
Dear All,
Is Accupressure Thereapy (Treatment) is effective to treat/cure the Duchhane Muscular Dystrophy..?
Thanks with Regards
Manoj Nag
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