PPMD Community

May 2009 Blog Posts (10)

Heart arrhythmia at 14

Hello,

I haven't done much on this site but read all of the very interesting things going on and enjoying everyone's pictures. Of course posting lots of pics of my handsome son. But now I feel like I need to post this to see what everyone else thoughts are or have information about severe heart arrhythmias in a 14 yr old boy with DMD. Brandon lives in El Paso with his Dad and his Step-Mom Catie, she's a member too (Momma Too), we stay in very close contact with each other because of… Continue

Added by Catriena Martel on May 28, 2009 at 12:17pm — 3 Comments

Marathon Training

I just realized I haven't blogged in quite some time. I thought I'd share a bit about my insanity...marathon training. I still think I'm at least a little crazy to be trying this. I've never been a "runner". I still wouldn't refer to myself that way. I ran my first half-marathon in January 2007 at Disney World. I seriously thought I was going to die by the end of it. I couldn't even lift my legs the rest of the day or the next. Getting in and out of the rides at Disney was oh so enjoyable.… Continue

Added by Laurie Paschal on May 28, 2009 at 10:54am — 2 Comments

school sucks!

is anyone else having issues with their sons' school just not getting it? im not looking for a school that has the best test scores, smallest class size or even some amazing college prep courses. i am simply looking for a school that is ACCESSIBLE to my son, KIND to him, and COMMUNICATES with me. he is currently in 4th grade and will be going into middle school next year. this has been a horrible year, his case manager actually threatened to take away his scooter as a punishment! ( how about i… Continue

Added by jenn on May 28, 2009 at 9:06am — 5 Comments

What is Normal

Yesterday, I found myself forgetting about DMD. As we might think, this is a great thing, I realized how it can be bad also. You see I had two of my boys with me while I was shopping (Levi 4 who has DMD and Ben who is 2). I was trying to get through the store, and found myself getting irratted at both the boys to hurry up. At one point I look down and see Ben at my feet, but did not see Levi. Thinking Levi is probably playing on the aisle we were just on, I tell Levi "to come right now, and he… Continue

Added by Joel Rhodes on May 26, 2009 at 12:33pm — 2 Comments

Im so Blessed for my wonderful MDA friends

Dalton got his power chair back around christmas and although we are happy we got it we were not so thrilled that Tricare wouldnt help us get a lift and because of that Dalton could only go to school because we had no way to carry his chair and his legs would give out. Well Im happy today because about a month ago I started calling around and writting letters and praying as hard as I think one person could and after fighting tooth and nail Tri care… Continue

Added by Lisa Vernarsky " Dalton"s Mommy" on May 25, 2009 at 12:59am — 1 Comment

Not sure if this has been posted before. AVI at TIDES Conference.

May 19, 2009 08:00 ETAVI BioPharma, Inc. to Present at TIDES 2009 Conference

AVI-4658 Therapeutic for Duchenne Muscular Dystrophy Featured in 'Innovation Showcase'



PORTLAND, OR--(Marketwire - May 19, 2009) - AVI BioPharma, Inc. (NASDAQ: AVII), a developer of RNA-based drugs, today announced that Peter Sazani, Ph.D., Executive Director of Preclinical Development, is presenting an overview of AVI-4658 today at the at the TIDES Oligonucleotide and Peptide Technology and Product… Continue

Added by lisa burke on May 21, 2009 at 4:52pm — No Comments


Staff
Resilience...

I have been invited to give a keynote address on Resilience and I need your help. What is resilence. Are we resilient? And if so, what does it mean really?



In my head I remember a commercial describing a linoleum floor as ‘resilient’. The commercial depicted glass breaking on the floor and literally bouncing off. No sign of nicks, scratches. No scar. No harm done. No obvious change in the floor. It was resilient.



On the other hand, I have heard so many people describing… Continue

Added by Pat Furlong on May 18, 2009 at 4:48pm — 19 Comments

Went To Our 6 month Checkup at Riley

It went fine Damien's muscle's are still the same as a year ago I'm excited for this. He needs to get some more blood work done but he does this every three months so normal routine stuff. I'm so happy his muscles are still the same. We are doing the Prednisone still the doctor thinks this will help him out. Our trip went really well though. Damien was excited because he didn't have to get bloodwork done that day he was happy. He's still able to walk and that's the best thing in the world to… Continue

Added by Amanda Trosper on May 16, 2009 at 11:00pm — 3 Comments


Staff
Exon skipping – waiting, worrying, and limited information

AVI issued a press release earlier this week. If you read the press release you will read that the DMD program AVI 4658 is on “clinical hold”. This means that the FDA’s position is that they do not have sufficient data to agree it is safe to move forward. In the past months, AVI has changed its leadership, recruiting individuals who have experience in drug development in rare disease. Several of these individuals came from Genzyme. AVI is currently in discussions with FDA in an effort to… Continue

Added by Pat Furlong on May 13, 2009 at 12:35pm — 41 Comments

Help Cure Muscular Dystrophy Phase II Launched on the World Community Grid

The long awaited Phase II Research Project for Help Cure Muscular Dystrophy Phase II on World Community Grid began distributing Work Units this morning 5/12/09. I have been waiting anxiously for this launch for months and am very excited that it has finally gone live. I have already tasked my 5 computers, including the powerful machine running 8 simultaneous Research processes, to now only run HCMD2 research until this project completes.



Here is the link to the WCG Research page… Continue

Added by Douglas Sanchez on May 12, 2009 at 11:39am — 2 Comments

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