Looks like PPMD has done it again, something wonderful that is.  This time they've set aside funds to assist families participating in clinical trials.  Although our son isn't involved in a clinical trial we've given that option much thought.  Moving to another place for the duration of a trial would cause many difficulties, financial being just one.  Now it looks like that burden has been lifted. 

 

Another reason to say Thanks PPMD! 

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Joshua is part of this trial. PPMD is funding the Calgary clinical trials where we are going. That is a huge relief and honor! I would lose my voice if I was to say as many thanks right now as I have said for the past 7 years.
What trial are you participating in. What are the requirements.?
We will be part of the ACE-031 trial taking place in Calgary. I'll give you the link for the requirements.

http://clinicaltrials.gov/ct2/show/NCT01099761?term=DMD+Canada&...
Do you live in Canada or the U.S. I live in Ohio and said they won't accept U.S. patients.
We live in Canada.
When will the trial start? Thank your son for being so brave and for willing to participate in the trial. I will be praying and thinking about you both. Hope all goes well.
Thank you, we hope all goes well as well. The trial was supposed to start in August but it may not start until September or October. This trial is one of the only ones Joshua can take part in because he is duplicated so... this is the only way we can help to find "proper" treatments if not a cure. If Joshua does not get the placebo and the drugs make a positive change like they are expecting and we are hoping, Joshua will remain on the drugs once the trial is over.

Naomi
GOOD LUCK WITH ALL NAOMI!!!
Here is today's update regarding the trial:


Hello!

This email is just to update you as to the current enrolment status for the ACE DMD trial that Dr. Mah is overseeing here at the Alberta Children's Hospital in Calgary, AB.

Currently, we have enrolled 4 patients in cohort I, and 3 patients into cohort II. We are, of course, very keen to get everyone enrolled into the study. However, enrolment for this trial is/has been very competitive, and at the moment, enrolment for our site has been temporarily halted, until we receive word about enrolling for the next wave in cohort III.

We will of course keep you in the loop, and let you know as soon as we can about possibly enrolling your son for cohort III or IV.

Please feel free to contact me at any time with any questions you may have, and we will be in touch! :D
Have a great weekend!

Thanks!
Thank you for keeping us updated.
Have a great day!
Melanie
Here's another update regarding the temporary halt.


This is a dose escalation study, enrollment will temporarily stop once each cohort is full and complete to allow for the safety committee to meet and ensure that it is safe to proceed to the next dose level. So the enrollment was halted but the study is still continuing.
Please let us know how it goes. My son too is duplicated, and there is precious little out there.

Joshua's mom said:
Thank you, we hope all goes well as well. The trial was supposed to start in August but it may not start until September or October. This trial is one of the only ones Joshua can take part in because he is duplicated so... this is the only way we can help to find "proper" treatments if not a cure. If Joshua does not get the placebo and the drugs make a positive change like they are expecting and we are hoping, Joshua will remain on the drugs once the trial is over.

Naomi

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