I’m going a little off topic, but this is becoming a pet peeve of mine. I think I’ve done a pretty good job of letting the Rett community know Trofinetide is a real hope- the way it works, why it works, the trial results and how they break down to SHOW it works. Well, for the last year or so, concussions have become a hot topic with Chronic Traumatic Encephalopathy (CTE) in the news and how it’s showing up in the brains of ex-football players.
Every time I read an article about it and it allows you to comment, I do. It usually goes something like… The players should really look into Trofinetide and post a link to the page on Neuren’s site that goes over TBI and Concussion. I’ve written to the NFL via email and Facebook. I’ve been blocked from writing on their Facebook page. I’ve written to the Player’s Union. I’ve even written to individual players mentioned in articles if I can find a Facebook page, Twitter page or email. And, I’ve written to the sports writers who write the articles. I’ve never once received any sort of response, until the other day.
I read an article written by Robert Hohler of the Boston Globe: Billion-dollar NFL concussion settlement ‘on the brink of collapse. So, I wrote to him.
I write because I cannot in good conscience be quiet. I have written to the NFL so often they have blocked me from writing on Facebook. But, because I KNOW there is a drug that has a good chance of helping players that have had concussions, I must keep trying. Trofinetide is a drug developed in Australia; it is indicated for TBI and concussion as well as Rett syndrome and Fragile X.
Trofinetide was developed with the aid of the US Army and Walter Reed Hospital. After a 10 year study, while the mortality rate did not improve, those who survived and were given the drug vs placebo did much better. (Study was called Intrepid 2566)
3 things hindered the study-the minuscule dosage, they are using many times the dose now (compare 10mg/kg to 200mg/kg; the drug was diluted by being administered by IV; and many patients were on diuretics and so the drug was flushed through their system. However with ALL that the soldiers who survived are doing better than the control group.
I hate knowing there may be, if not an answer, a treatment that will improve the lives of those suffering due to concussions.
Neuren Pharmaceuticals is the name of the company. Their website has a page devoted to Concussions and TBI.
I hope some day, someone, anyone will look into possibly doing a trial with football players, it could be a game changer.
And, he wrote back. “Thanks very much, Melinda. It looks like it might be promising. Best, Bob”. It’s not much of a response, but it’s A response and maybe just maybe he’ll mention it to someone who will at least take a look.
I also wrote to the law firm representing the most players. I am sick to death of hearing about how any kind of treatment is years and years away, when it’s possible there is already something that might help. I feel so sorry for those players that are suffering, knowing that maybe they shouldn’t have to suffer.
I know concussions are of 0 significance in my life, except the one I got from my brother once, yet knowing my fellow human beings may be suffering and be left to that suffering simply for the lack of knowing that there is already something that might be able to help them is not something I can sit quiet about.
So, if there’s any one reading this who has any connections in the sport world, PLEASE, PLEASE mention it. Read about it. Print it out and put it in front of someone who can be the difference.