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Anthony Castle started the drug 6 days ago

If anyone out there wants to follow the trial, what it's been like so far and the progress we see go to his blog on www.caringbridge.org/visit/anthonycastle

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Permalink Reply by cheryl cliff on August 27, 2008 at 9:14am

Thank you Jill!

I read your site and it looks real good for Anthony!! Even though PTC won't work for my son Anthony and the others are in my thoughts daily. Something, somewhere must start to work for our sons and this may be it. Then, on to the next group of DMD boys!!

cheryl

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Permalink Reply by Jill Castle on August 27, 2008 at 11:14am

Thanks so much for the support. I hope that we have broken the glass ceiling for everyone. I have so manhy dear friends who PTC 124 won't help and they have all been so supportive. It makes me committed to continueing the fight until all the boys have treatment. Have you checked into the project catalyst drugs from PTC coming down the pipeline? Those will help everyone.

cheryl cliff said:

Thank you Jill!

I read your site and it looks real good for Anthony!! Even though PTC won't work for my son Anthony and the others are in my thoughts daily. Something, somewhere must start to work for our sons and this may be it. Then, on to the next group of DMD boys!!

cheryl

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Permalink Reply by Jerry Dallapè on August 27, 2008 at 12:35pm

I see that Anthony worked with Dr. Gatmeier last week. Ewan just loves him.

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Permalink Reply by Jill Castle on August 27, 2008 at 12:41pm

Really? That's funny. He seems so un "kid-friendly" but he's starting to warm up to us. Are you on the extension trial?

Jerry Dallapè said:

I see that Anthony worked with Dr. Gatmeier last week. Ewan just loves him.

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Permalink Reply by neeraj on August 27, 2008 at 3:09pm

Hi Anthony/Parents
I know you will be 100% soon,2 years ago when my son was diagonesed doctors told us the usual dmd stuff to them it was another patient and till today i dread speaking to these bunch of negitive people.Since then my son 8.2 year now has been tested as nonsense mutation and will be screened shortly of ptc trial here in UK.

We pray for every child to be well and sometimes wish these doctors stop acting as fortune teller's.36 months hopefully may be sooner summit's plc will have utrophin upregulation for everyone,So Hold ON.

Regards
Neeraj

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Permalink Reply by cheryl cliff on August 27, 2008 at 5:53pm

Hi Jill,

I haven't spent much of the summer reviewing what PTC has coming but should be able to do that now that school has started. We can hang in there for a wee bit longer for something postive to come thru for the rest of the boys...some are not so lucky and really need it now.

cheryl