But for those of you who are not actually part of the fragile x community, you may be wondering why on earth you would ever become a member of the NFXF. Even if you donate every now & then, you're probably thinking that it's not necessary to become a Member.
It's not necessary. You're right. But I don't think you realize what you're missing out on. It's not just for people who are directly, personally impacted by fragile x. I am telling you that membership is beneficial for any parent, educator, or healthcare provider... or even someone who is a friend or relative to any of the aforementioned.
The support that the NFXF offers & the knowledge they bring together is unparalleled.
One of the many membership privileges is access to webinars. This evening the NFXF hosted a discussion on the topic of medication. And it wasn't just someone presenting information, but quite literally a Q&A... with The Dr. Craig Erickson of Cincinnati Children's Hospital Medical Center. It was a discussion. This is why the NFXF refers to their webinar series as "Let's Talk". And people asked, & Dr. Erickson answered... on-the-spot.
And if you're appropriately educated on fragile x & associated disorders, then you know that the benefits of this research stretches FAR beyond our community.
I am also a registered user with the global conferencing company that the NFXF works with. And I played back portions of the webinar because as I was listening, some of Dr. Erickson's words nearly brought me to tears. And I wanted to isolate them & remember them... should I ever forget why it's so important to support the people who support us... or should I ever need to remind others...
So that is why, for the first time in weeks, I decided to log into my blogger & get it all down.
Here is some of what he said. These are just excerpts, but this is why we have reason to keep moving forward: (Remember, the context of all of this is surrounding current medication options, as there is nothing specifically indicated for the treatment of fragile x syndrome. In addition, there are clinical trials...)
"Going after one neurotransmitter may not be the end-all be-all, especially for older individuals... We hope to start doing more research in that area... But I'd be lying if I didn't say it's really complicated... But I think the future of new targeted treatment may be similar to things like oncology when multiple agents are needed to treat... That may be the direction we're going.... I think it's a hopeful direction..."
"I think the big issue with the FDA is going to be safety first. I've been at the FDA talking about fragile x new treatment development & I think they're well-meaning folks that understand the need... they understand the lack of effective treatment..."
And when asked about certain clinical trials...
"What's biologically exciting is that we're able to show moving things, that are (otherwise) dis-regulated, in the right direction..."
"There are great efforts around the country... There's a lot of us out there in academia & in industry... I want to strike a hopeful chord, we're not giving up... We may need to combine things or take a different approach, but no one's really abandoning ship... We're far from that."
He talked about working through regulatory barriers & about the importance of academic science & working together with families... & he mentioned others who have dedicated their careers to helping us... Dr. Berry-Kravis... Dr. Hagerman...
"... & others that are really trying to not completely give up & look at other ways to re-tool, because we think there may be better solutions... Whether it's better outcome measures, combined therapy, whatever it may be..."
"It's important work & we're not giving up on new targeted treatments & our door is always open for consultation... to talk with providers... from around the United States & around the world... If you're interested in our research, fine, if you're not it doesn't matter-- we're really in it to improve treatment & we're doing it for the families... & I love these opportunities..."
When is the last time you interacted with a healthcare professional who is as passionate about something as you are. I am telling you that these doctors, scientists, & specialists fall in love with our community just because. You owe it to yourself to find out why.
I believe the next webinar is on Tuesday, November 11th with Dr. Karen Riley. (You can look her up-- her credentials will leave you picking your jaw up off the floor.) The discussion will be focused around Managing Meltdowns.
Who can't relate to that.
Are you a member?