Joshua’s Mom on Participating in Fragile X Clinical Trials

//Joshua’s Mom on Participating in Fragile X Clinical Trials

Joshua’s Mom on Participating in Fragile X Clinical Trials

Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.

Video Transcript

Hi, my name is Diane and my son Joshua is in the FX LEARN study. We’re about to have our 10th visit, so we’ve been in the study for a little over a year now.

Looking back when my husband and I first considered to see if our son Joshua was a candidate for the study, we were a little apprehensive. We understood it was going to be a long study and it would be pretty involved.

As a mother of eight I realized that if I was going to take this on that I would have to be fully committed. And we decided—when we found out he was an appropriate candidate—that we were just gonna go full in. For two reasons.

Number one, with it being a double-blind we understood that during part of the study our son was actually going to be put on on the real medication, so even though in the beginning part, it’s a double-blind and we didn’t know if he’d be on the placebo or the real medicine, there would be a part of the study where everyone is on the real medicine. So that was a huge plus.

And the second, even bigger: language intervention.

Giving my child the tools and opportunity for communication is one of the biggest things because if he can communicate, it opens up so many doors for him, and knowing that we would have this language intensive was a huge motivator for us to join this study.

The language intensive is intensive, it was, well, it was time-consuming. It was just an amazing opportunity for our son, and not only were we able to just see him blossom so much, it also became a tool that I was able to bring into my son’s schools when he started the study. He was four years old and in the Early Childhood Center and we were able to present that to his preschool teachers and his therapist there. We had a little difficulty getting them to fully understand some of the implementations, best practices, and this was an actual tool and saying this is why this is great and they loved it and they were able to implement that, and now the same thing in elementary school, were able to bring it there and it’s a huge resource.

Also, as a mom with a 16-year-old son with Fragile X it was always difficult for me to find a therapist who understood Fragile X and could really … knew how to work with him, and this study gives you that, and it’s free—and not only is it free, there’s a travel stipend that’s offered and there’s food reimbursements as well as a little, small stipend for every visit that you go on, and so those were all just great ways to seal the deal.

The one piece of advice I give everybody is: Just make the commitment, and know that whatever you give to this study you are going to get back and twofold.

It has been just a great opportunity for us and I understand a lot of parents might be apprehensive hearing of or having been part of studies years ago where funding has been pulled, or it didn’t work out … it is so sad and it’s devastating, especially at that time.

However … whatever we want to happen, we just can’t sit and wait … so if it’s something you might be a little apprehensive about, we were there. My son— my 16-year-old son—was part of a study, when the funding was pulled it was pretty devastating, however, it happens. And, the researchers learned from it and a lot of the reason this study has come to fruition is because of past failed trials, and they’ve learned, and they’re making those changes right now. So just think about the opportunities it might offer your child right now, and I encourage you to give careful consideration.

We’ve been thrilled with this study, we’ve met some incredible people, and I am so happy that we’ve been part of it. I hope this helps you a little bit, I hope you all have a great day and take care.

By | 2019-09-17T13:29:18+00:00 Sep 16, 2019|Clinical Trials|Comments Off on Joshua’s Mom on Participating in Fragile X Clinical Trials