July 2009 Blog Posts (11)

the flu... and tamiflu

i got a call yesterday from the double h ranch where my boys are at camp for the week. it seems that one of the councelors in max's cabin has the flu. not only does that guy have it, but several councelors do. when i called the nurse she informed me that all campers exposed had already begun tamiflu as a precaution. YIKES! i think that was the right choice, and my doctor agrees, but when i read the potential side effects, and some previous posts on here i got a bit freaked out. i hope all is… Continue

Added by jenn on July 30, 2009 at 8:29pm — 2 Comments

EMEA meeting in London

You may or may not have heard Treat NMD has scheduled a meeting with EMEA (European Medicines Agency) or the regulatory agency for the EU. The purpose of the meeting is dialogue: discussion about potentially promising treatments for Duchenne. The discussion will cover a range of areas to include drug development, clinical trials, and outcome measures. Our champions in Congress have written to FDA, urging them to take part in this critically important conversation.

For the last many… Continue

Added by Pat Furlong on July 29, 2009 at 3:46pm — 7 Comments

Bipap /Neumothorax

I keep coming and going into the PPMD site...to learn new things and the challenges that we all face on a daily basis.

This last week has for sure been a challenge for Tim...actually this month. He has been in ICU 2x's this month now. Apparently his bipap setting was set to high for him and probably caused the neumothorax. They thought it would resolve the first time he was in here but instead it only got worse. By July 21, after spending 8 hours in the waiting room with chest pains… Continue

Added by Dee on July 26, 2009 at 5:30pm — 3 Comments

Growth Plate Fractures

My son fell this weekend and hurt his arm. We were out of town camping and went to a local hospital. X-ray detected no break. He mentiond there was an extra bone at the growth plate and acted like it was no big deal. I just got home and googled extra bone and it could mean a fracture and is very hard to detect on an xray. Has anyone experienced a fracture on the growth plate and if so, what were the symptons. He is in a sling, wearing on and off. He did go swimming today and would not use his… Continue

Added by Darcy Tumminello on July 19, 2009 at 8:30pm — 1 Comment

Go Forward... Step Back..Breath...REACH OUT!

July 24th will be 13years on this DMD journey with my son...I must say it has been one heck of a ride! Luke is now 17, going into his senior year which I never thought would happen...He just took his college aptitude test...he is going into AutoCad...He is smart, compassionate, caring, brillant with a great sense of humor and I can honestly say we are friends tackling this DMD thing together!

Here are Luke's chapters from his life journey:

Crawled at 8 months

Walked… Continue

Added by Misty VanderWeele on July 15, 2009 at 11:28pm — 2 Comments

Run for our sons

Is there any one in the KC MO or KS area who is interested in starting a run for our sons running club? Thanks, Cori Tharp

Added by cori tharp on July 15, 2009 at 7:15pm — 2 Comments

Seattle Rock and Roll 1/2 Marathon

On June 27th, Wyatt's dad, Tom and grandpa Bill ran the Seattle Rock and Roll 1/2 Marathon to raise money for PPMD. Our family really had a great time at this event. Not only was the weather amazing, but we also got to meet other people who are as passionate as we are about raising research money to fight Duchenne.

Bill ran the race in about 1 hour 40 minutes, Tom was a little slower running about 2 hours 15 minutes.

We want to sincerly thank all our friends, family and… Continue

Added by Wyatt's Mommy, Melissa on July 15, 2009 at 1:58am — No Comments

What's in a name?

PPMD was founded 15 years ago. Feels like a long time in so many ways. We were young then. There were few disease specific organizations and no Duchenne specific organization. The very idea of starting an organization that would take on the challenge of treatment and a cure for Duchenne was pretty overwhelming. We were not thinking about issues of identity or branding. We were a small group of parents and our first thought was our sons. It made sense to be the “Duchenne Muscular Dystrophy… Continue

Added by Pat Furlong on July 14, 2009 at 9:45am — 5 Comments

conference 09

Thanks to everyone for their words of encouragement at this year's conference. It's funny how many people tell me I give them strength, when it is actually all of YOU that give me the strength to present with honesty, compassion, and humor. We all have one life to live. In one of my favorite movies: The Shawshank Redemption, the character of Red utters an important line:

Get busy living, or get busy dying.

I choose living. We must all see the glass as… Continue

Added by Pat Moeschen on July 10, 2009 at 2:37pm — 1 Comment

Back surgery

I need info about back surgery with rod insert for boys with
DMD. Has it been successful for your child?

Added by Barbara Speas on July 9, 2009 at 3:29pm — 2 Comments

Being a Pioneer (Part 2)

Things have progressed since November 2008. Jon has decided to continue in the PTC trial and is particpating in Muscle MRI trial at the University of Gainsville. When I asked are you sure, he said "Mom - if I am able to particpate in these trials, I think I should": "Not all the boys can." So with Jon's determination and Dad's help Jon remains an active participant in these trials. My husband and son continue to make trips to University of Utah for the PTC trial and to Gainsville. The trips… Continue

Added by Christine Piacentino on July 8, 2009 at 8:08am — 2 Comments

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