Siren001

So essentially, there is no hope. I’m so sad, for all of us. Thanks for trying Jay. Didn’t mean to be so salty.

Only 254 views. To get the attention of Johns Hopkins wasn’t easy. Everyone’s participation was critical here. I wonder out of the 254 how many filled it out. Such a wasted opportunity…

If only this were the case, we’d all have answers what HPPD is, what part of the brain has been compromised and how to fix it.

This isn’t a joke.

I’m asking you to assume the responsibility of fundraising for the research using this portal.

Well, yes and no. The price tag for the research is $800k. That’s the bad news. The good news is the university is matching funds bringing the cost down to $400,000. So, considering this website is pretty much dying in light of social media apps, yet it has email addresses of the highest count of people with HPPD, why not use it to raise awareness on the MacQuarie Protocol and fund it? We’re the ones who have to save ourselves because nobody else will. You’ve done great work Jay, don’t get me wrong but things have to go next level here. There needs to be a campaign stemming from this website to fund the HPPD research program at Macquarie University. Please consider it…

My boss once told me in regards to a deal I was involved in,”if hope is your only plan, you don’t got a plan.”

Wanting to help people is fine but it never stops. You’ll never ever get to a point where the suicide PM stop. And you must have saved some people, maybe bought them more time but a lot of them are no longer with us. The only way to truly help is to get that Australian research funded….

So you think HPPD isn’t sone form of brain damage?

No, this is bullshit. We need this cured. Accepting it and going through the ups and downs torturous rollercoaster of HPPD for a lifetime is insanity. This condition, disease, whatever the hell it is must be front page news. It has to be on the radar of every researcher working with psychedelics and neurologists who specialize with substance abuse disorders. There’s nothing warm and fuzzy about this post! It’s a cry for help! How did it turn into some Kumbaya group HPPD hug?!

So this never happened.

These are all great theories. Too bad nobody here is capable of testing them.

Why is it nobody gives a shit about us? Why isn’t research happening? Why are psychedelic companies allowed to push their products on the market without researching HPPD?!

Why isn’t this website being used to fund the research? If that’s all we have and that’s what McConnell wants, do we really have a choice?!

This project isn’t happening…

Everyone, gather around. That HPPD research in Australia is really our only hope so considering that there are around 40,000 people here, about 10,000 on Reddit and a few thousand on Facebook, together we could all fund this project on our own. ”Link To Donate” ———- That’s hope not this stupid circle jerking of false hope. That’s what you should be doing with this website instead of wishful thinking.

Lol, why put on me? You’ve been here more than 20 years. What’s your plan to sit around waiting for 20 more? Nobody is coming to help us. Nothing is being done about HPPD. The one thing that is happening with psychedelics is that they are coming to the market! Imagine all the money stakeholders will make who don’t want a single word mentioned about HPPD but go ahead, wait around for something magical to happen. You’ll end up old and grey (if you’re lucky) with only a few marbles left rattling in your brain. YOU ARE IN CHARGE OF THE LARGEST ONLINE SUPPORT GROUP IN THE WORLD! What are YOU doing with it?! Maybe you should get everyone to donated to the PRF or whatever non profit that exists to fund research but instead, most people just vent here and mourn their old life! You know what? People with health issues, with chronic diseases don’t do this, they don’t wait around hoping for something to happen! In fact, they very idea of hoping without action is totally absurd. Do something meaningful with this group for Christ sake!

What’s this organization doing to help? Haven’t seen anything lately coming out from them.

You don’t need a celebrity platform. Plenty of celebrities have died from various diseases accepting that the disease process is just a part of life. Perhaps that’s exactly what we should all do here because organizing and doing the work that hundreds of non celebrity tied disease centric organizations do is just not in our DNA. As far as acting as Guinea pigs goes, I’m not saying don’t do it, I just think that’s taking on more risks on an already bad situation. We need the help of scientists to fully understand this condition not waiting around for something that may never come in terms of a treatment, there are people on this forum who have already waited for over 20 years for a medical breakthrough that sadly still hasn’t come. Waiting is not going to do a damn thing. Take control of your disease by organizing…. At the very least fight to have your minds restored to the condition that they were in, to see the world the way it was intended but personally I miss drinking coffee, happy hours, even smoking a joint in the beach watching the sunset. How I would kill to enjoy any of those things again but the plan is to wait? Wait for what to die? Sorry, I prefer to fight rather than waiting around for a miracle that may never come. There is no treatment, no cure without taking in responsibility for our situation. The moment you realize that that’s when you’ll either dig deep and find the courage to do what’s right or surrender. You choose…

Think about it this way, if Michael J. Fox waited around for something to come along instead of taking ownership for Parkinson’s Disease, his disease, no progress would have been made. Chances are he’ll live to see the day when a cure will be available for Parkinson’s due to all his advocacy, outreach and fundraising efforts. That’s how this works not by day dreaming for a cure or venting online how awful a disease is.

Hope is built on actions not waiting around for something to come along.