July 2010 Blog Posts (12)

My Son Ishan who is 8Yrs and 4Months has recently Diagonsed with DMD.

My Son Ishan who is 8Yrs and 4Months has recently Diagonsed with DMD. Continue

Added by Rajiv Pandey on July 29, 2010 at 9:18am — 3 Comments

A Bedtime Story

Who gets the award for finding the treatment or cure? I received this question over and over and yesterday again, in an email from a parent. She provided a list of each organization and what projects or companies they have supported. In my head, I wanted to say all of us, some of us, what does it matter as long as the drug is developed, the project funded. Her real question was –if I raise money for you, will you get ‘the cure’ for my son? My first thought was to say – ‘cures’ do not come from… Continue

Added by Pat Furlong on July 27, 2010 at 1:08pm — 2 Comments

Good Friends

Over 4th of July weekend Jon got a couple of phone calls from his friends. That weekend was pretty busy. But, phone calls for Jon to attend parties are rare; we almost never give up any opportunity for him to attend a party with his friends. We always try and make it work.…


Added by Christine Piacentino on July 21, 2010 at 7:06am — 2 Comments

July 2010 Update


We recently learned that Bradley has steroid induced Diabetes Type II.  He had glucose tolerance testing at Cincinnati Children’s Hospital. His blood sugar was 206, 2 hours after the glucose drink. He started an oral medication, metformin which will help control his blood sugar, his appetite and his weight. We are checking his blood sugar once daily and his blood sugars have been normal at home.


Everything else went well at his Cincinnati visits. His heart MRI…


Added by Lisa Jones on July 15, 2010 at 9:30am — No Comments

What is an IND?

What does it stand for ? Is this something that we ca use in europe as well?



Added by Felix Güthe on July 14, 2010 at 5:33pm — 1 Comment

Conference 2010

I’m not going to recap the 30+ hours of presentations from this year’s Conference. We will soon post many of the presentations and Sharon will blog about various presentations and projects over the next weeks and months. I wanted to tell you a bit about what took place this year and look forward, to share some thoughts about next year… Already you ask? We spend a lot of time thinking about the Conference, trying to improve it each year, trying to make sure we provide comprehensive information… Continue

Added by Pat Furlong on July 7, 2010 at 4:29pm — 6 Comments

Shea Racing's No. 67 PPMD / Dick Ide Honda finishes 8th at Watkins Glen

July 3rd World Challenge Watkins Glen

Racing for a Cure

Shea & Team finish 8th in TC… Continue

Added by Shea Holbrook on July 7, 2010 at 12:00pm — 4 Comments

Rock, meet Hard Place

The news that GSK is not pursuing a phase III study for skipping exon 51 here in the US has certainly come as a blow. It seems that the FDA would like to see longer term toxicology data before approving the 48 week human study. Meanwhile, almost every European family with DMD will have access to the phase III study. It seems obvious that the FDA is being blindly obstructionist and GSK is showing its true stripes as money-sucking big pharma company that is going to choose the path of least…


Added by Sharon Hesterlee on July 6, 2010 at 4:00pm — 24 Comments

Sibling Info

For those of you who caught our siblings panel and need additional information (or those who couldn't make it), I have attached a link.


Remember, FAIR does not mean everyone gets the same, it means everyone gets WHAT THEY NEED.

Added by Jill Castle on July 5, 2010 at 1:00pm — 2 Comments

Today's Update from JettRiders


Added by Christine McSherry on July 4, 2010 at 10:29am — No Comments

Jett Ride 2010

In case you have not heard, Jett Foundation is once again providing an opportunity for siblings, friends, family to "ride for those who can not". Currently we have 12 cross country youth riders, several additional riders that will be doing "legs" or "sections" of the ride and adult chaperones.…

Added by Christine McSherry on July 3, 2010 at 9:59am — No Comments

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