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August 2011 Blog Posts (9)

Vote to Win a Signed Simpson Racing Helmet & Proceeds Benefit PPMD

Vote for our favorite Pirelli World Challenge lifestyle photo. A Simpson helmet signed by all of the Pirelli World Challenge drivers will be awarded to the photographer with the top ranked image in the Lifestyle category and the Racing category. But here's the twist! Photographer, Chris Schutze offered if his photo wins he'll donate the signed helmet to the Shea Racing Duchenne muscular dystrophy charity efforts for raffle!

 

VOTE this photo! Then at the end of the season we'll…

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Added by Shea Holbrook on August 30, 2011 at 1:18pm — No Comments


Staff
Johnny and Julie’s X-Cellent Wedding

Next to Jenny and Kris’ wedding, this wedding  of Johnny and Julie was perfect in every way.   It was X-cellent because it was held at Xavier University, Bellarmine Chapel.  Johnny had  called me several months back to ask if I would do a reading. And while I called him Johnny, Patrick always called him Kat.

 

Johnny (Kat) and Patrick were friends.  I would be standing in for Patrick.  I have known Johnny for years and seeing him all grown up, about to be married was wonderful.…

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Added by Pat Furlong on August 22, 2011 at 12:41pm — 4 Comments

Ataluren study

The study of previously treated boys nmBMD/DMD with Ataluren was prolonged for the next one year, see http://clinicaltrials.gov/ct2/show/NCT01247207?term=ataluren&rank=8

Added by Blazena Kaderabkova on August 20, 2011 at 12:28pm — 6 Comments

#RaceToEndDuchenne Versus@5pmEST

Added by Shea Holbrook on August 19, 2011 at 3:08pm — No Comments


Staff
PPMD Provides Travel Grant for Clinical Trial

By now you have probably seen the latest news from our friends at AVI BioPharma, announcing it has initiated dosing in a Phase 2 study of eteplirsen, their lead exon-skipping therapeutic candidate for the treatment of Duchenne. Parent Project Muscular Dystrophy has been a long-time believer in the work being done at AVI and was happy to provide a $50,000 travel…

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Added by Pat Furlong on August 17, 2011 at 12:07pm — 11 Comments

Homemade Tater Tot

I have a blog that you are all welcome to read - www.homemadetatertot.blogspot.com It is also featured on the Washington University Center for Muscle Biology's website http://wcmb.wsu.edu/homemade-tater-tot/   :)

Added by Katherine Palmer on August 14, 2011 at 4:30pm — No Comments

What growth hormone to use?

Hello everyone i would like to know if any of you are using Saizen for your kids; if you dont and use something else, please let me know why, i am know in the decision process of what to use, since after the last check up the doctors recommended this hormones, thank a lot to all for you help

Added by Blanca Wainberg on August 12, 2011 at 1:00pm — No Comments


Staff
IEP, Then and Now

Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.

 

IEP 

By, Ivy…

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Added by Pat Furlong on August 10, 2011 at 11:00pm — 3 Comments

Holbrook Determined at Mid Ohio Rounds 7&8 Pirelli World Challenge Touring Car

Lexington, OH – Shea Holbrook returned to the Pirelli World Challenge Touring Car Championships for the second half of the season, rounds 7 and 8 at Mid Ohio Grand Prix in her No. 67 TradeBank/beatbyagirl.org/K&N Filters Honda Civic Si.

 

Holbrook’s last race with the series was round 3 at the…

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Added by Shea Holbrook on August 8, 2011 at 11:20pm — 2 Comments

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