I posted this in the OG but want as many eyes on it as I possibly can. Mods do as u wish...
As some may know, I'm the father of a two year old boy with a terminal illness, SMA type 1. Currently we've been lucky enough to get involved in a clinical trial in Ohio for an experimental drug but most aren't able to have access. The access to experimental drugs for patients with terminal illnesses like ALS, Muscular Dystrophy, SMA, Parkinson's and terminal Cancer is severely lacking and needs to change on many levels. Too many to get into here. Here's the deal... A group of charitable organizations are getting together to push some legislation in DC specifically for the FDA to make serious changes to how they manage and allow drugs to be used for terminal patients. The Right to Try Act and other bills being presented. We can help. Please visit www.myrighttotrynow.com Please share videos and links in your social media networks if possible. Write to Congressmen and Senators. Endorse the bills, attend the rally in DC and donate if at all possible. The more exposure and response we can have, the bigger the impact.
Just watch this video and tell me this isn't a cause worth helping out.
My wife and I have been invited to DC for the rally coming up in June. We will be there with my little guy. My wife and I should be getting some face time with politicians and press too. Im not on FB but my wife has one for the lil guy. Here's his Facebook page if you want to follow what we're up to there https://m.facebook.com/jacksonconnorsilva/
Please do what you can, even if it's just sharing or liking the page. Any terminal illness is as much a burden as any family can bear. The preservation of life, even if only a little while longer, if at all possible is all we can live for. Help UG!!! If someone can repost the links and embed the vids it's much appreciated.
I'm all for this. As long as the waivers are signed and everyone understands the risks, there's no reason that terminal patients shouldn't be able to try any and every treatment they can find. The FDA's unilateral regulations need some updating.
I'm all for this. As long as the waivers are signed and everyone understands the risks, there's no reason that terminal patients shouldn't be able to try any and every treatment they can find. The FDA's unilateral regulations need some updating.
I'm all for this. As long as the waivers are signed and everyone understands the risks, there's no reason that terminal patients shouldn't be able to try any and every treatment they can find. The FDA's unilateral regulations need some updating.
Exactly. My son was lucky enough to get into a trial. We had to basically put his life on the line and sign it away because of the risks of death or other catastrophic side effects. It's like well, wtf if we do nothing, we already know it's a death sentence so we're willing to try anything. I did ridiculous amount of research on the drug and trial before making the decision but having no legit alternative way to make things better other than an experimental drug, sign me up. Risk vs Reward is Huge. My son may possibly be in a state where his disease is no longer terminal. It's way too early to tell and I'm an eternal optimist but the only chance he had was with this trial. I believe other terminally ill people should get the same opportunity. Let them have that control to take a risk and possibly improve their situation, there is really no alternative.
It would be great if we could get some celebrity help, maybe any professional MMA fighters or other athletes to show support for those in the community that can't play sports because of their disease. UFC? Bellator? Any help we could get would be colossal.
I'm all for this. As long as the waivers are signed and everyone understands the risks, there's no reason that terminal patients shouldn't be able to try any and every treatment they can find. The FDA's unilateral regulations need some updating.
Exactly. My son was lucky enough to get into a trial. We had to basically put his life on the line and sign it away because of the risks of death or other catastrophic side effects. It's like well, wtf if we do nothing, we already know it's a death sentence so we're willing to try anything. I did ridiculous amount of research on the drug and trial before making the decision but having no legit alternative way to make things better other than an experimental drug, sign me up. Risk vs Reward is Huge. My son may possibly be in a state where his disease is no longer terminal. It's way too early to tell and I'm an eternal optimist but the only chance he had was with this trial. I believe other terminally ill people should get the same opportunity. Let them have that control to take a risk and possibly improve their situation, there is really no alternative.
It's hard. I see how well my son and other children are doing with this drug trial and I know at the same time other kids with SMA are dying. It's frustrating. Because this drug is a game changer. Seriously.
