Replies to This Discussion

Permalink Reply by cheryl cliff on August 9, 2008 at 11:26am

We wish you and all the other little guys like him good luck and great health! Please let us know how things are going for Jacob as he begins this historic scientific journey. Even though PTC124 won't help my son we will be watching these trials and praying for a breakthrough for at least some in our DMD family.

You are correct, doing nothing is not an option.
all my best,
cheryl

Permalink Reply by neeraj on August 9, 2008 at 3:11pm

Hi Donnie & linda

Please share your experience of the screening,can you tell us how long it took from screening to getting the drug,what did jacob got tested for and i can add hopefully you will have a treatment for jacob and my son and many others soon.

Permalink Reply by Donnie and Linda Owens-Jacob Owens on August 9, 2008 at 9:19pm

cheryl cliff said:

We wish you and all the other little guys like him good luck and great health! Please let us know how things are going for Jacob as he begins this historic scientific journey. Even though PTC124 won't help my son we will be watching these trials and praying for a breakthrough for at least some in our DMD family.

You are correct, doing nothing is not an option.
all my best,
cheryl

Permalink Reply by Donnie and Linda Owens-Jacob Owens on August 9, 2008 at 9:33pm

Thank you for your reply. I know there is a lot of research out there for other causes for DMD and I pray they'll come soon. We pray everyday for all our little boys. We'll keep you posted as we go.
Linda

Permalink Reply by Donnie and Linda Owens-Jacob Owens on August 9, 2008 at 9:36pm

neeraj said:

Hi Donnie & linda

Please share your experience of the screening,can you tell us how long it took from screening to getting the drug,what did jacob got tested for and i can add hopefully you will have a treatment for jacob and my son and many others soon.

Permalink Reply by Cinni on August 13, 2008 at 5:04pm

Hi Linda, our son Brandon is halfway through the PTC 124 trial at Cincinnati, we have had a great experience with Dr. Wong and the trial cordinator Paula Morehart.

Permalink Reply by Donnie and Linda Owens-Jacob Owens on August 24, 2008 at 10:15am

Cinni said:

Hi Linda, our son Brandon is halfway through the PTC 124 trial at Cincinnati, we have had a great experience with Dr. Wong and the trial cordinator Paula Morehart.

Permalink Reply by Donnie and Linda Owens-Jacob Owens on August 24, 2008 at 10:22am

Both Paula and Dr. Wong are terrific!! We just got back from Cinncy on Friday and Jacob took his first dose of PTC124 on Thursday. He hates the taste so we have to work with him to get it down. Have you noticed any difference in Brandon's stamina or strength? I know we're all wondering whether our sons are taking the real thing or the placebo. Please stay in touch and we'll do the same.
Linda


Donnie and Linda Owens-Jacob Owens said:

Cinni said:

Hi Linda, our son Brandon is halfway through the PTC 124 trial at Cincinnati, we have had a great experience with Dr. Wong and the trial cordinator Paula Morehart.

StaffPermalink Reply by Pat Furlong on August 24, 2008 at 1:52pm

Linda,
I think we all have our fingers crossed for you. I realize participation in the clinical trial will not be easy, but we are all pulling for you and very (very) thankful. Please let us know how things are going.
Sincerely,
Pat Furlong

Permalink Reply by LarryW on August 25, 2008 at 2:35pm

So by halfway through, do you mean that you have already taken PTC 124 for almost 24 weeks? It would be nice to hear how things are going for your son and the improvements that you have seen in him.

Thank

Larry

Donnie and Linda Owens-Jacob Owens said:

Cinni said:

Hi Linda, our son Brandon is halfway through the PTC 124 trial at Cincinnati, we have had a great experience with Dr. Wong and the trial cordinator Paula Morehart.