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Just wanted to say I seriously appreciate your posts bro. You bring a lot of hope. Thanks!
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Bit of a self fulfilling prophecy, no? Your money would be used for research. But you donât donate. So, we move at a pace, as you so astutely pointed out, that is rather slow.
A few bucks from every active user also couldnât hurt.
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If you think one person not donating is the cause of the slow pace then you are definitely delusional. Finding treatment and cures for diseases take decades. Lifetimes even sometimes.
With all the money that has be given thus far, what has actually been discovered? The only things the scientist have said is there are gene alterations and low amounts of important chemicals in the brain/spinal fluidâŚ
We arenât on the verge of a cure or treatment, we are in the infancy. There arenât trials being done for a treatment, they are still doing trials trying to figure out what is different in people with PFSâŚ
âSend 2 million more to unlock the next stageâ
You will be lucky if they even find something in our lifetime. Thatâs not negativity, thatâs being realistic. If people worried more about marketing this to the public people would feel a sense of obligation to help victims of PFS because they would feel bad for those that are suffering.
Itâs 2023 and we have not even 1 treatment.
But il gladly humor youâŚ
Il donate $500 to the foundation in the month of April if you will match it and show proof/receipt. I will do the same.
I find it bewildering how so many in our community act as if an enormous amount of money has been invested in this issue. Sometimes I wonder if Iâm reading the words from a venture capitalist who is mad his $20,000,000 investment was wasted on frivolity, or a member of a community that has done next to nothing to research their disease. The reason we have anything at all going for us is because a few key individuals moved heaven and earth. John Santmann invested half a million. Axo and Awor wrote a comprehensive literature review and got scientists on board. Mitch has invested a significant amount personally, financially and in terms of effort. And then there are others stepping up now.
These baseless claims about cures taking âlifetimesâ is maddening. Various diseases such as ADNP will have treatments within 3 years. Why? Because their community raised funds. Itâs simple. On average, our community has given10,000-20,000 USD per annum, This is a paltry sum compared to the millions patients have wasted on hormone treatments, supervised water fasting, and Sicilian virgin lemon himalayan bathsalt detox voodoo.
On average, rare disease communities need 2-3 million USD to uncover the mechanism and have therapeutic targets. If you had bothered to research this question you wouldnât be spouting such ignorant things.
https://www.whatisbiotechnology.org/index.php/timeline/science/CRISPR-Cas9 here is also an inspiring timeline detailing the rapid advancements taking place with CRISPR. I came across this last year and encourage anyone who is pessimistic about the speed of medical advancements and treatments to have a read.
It starts with the individual. If you want to make TikTok videos thatâs great. Funding is also important.
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Itâs not a baseless claim, the average time to find a cure for a disease is 20 years⌠You can look that up yourself. Keep in mind thatâs if thereâs a high demand for a cure and a lot of people suffering! PFS is a drop in the pond.
Then ontop of that do you know how long it takes to actually bring a new drug to market even if they found a treatment?
Im not saying people shouldnât donate, Iâm saying you will be lucky if there is a cure in your lifetime and I believe that wholeheartedly. I hope itâs not the case, but letâs be realistic here.
It takes millions ontop of millions to get things done in the medical field. Even if every person who is actually active and not MIA in the forums donated 100 a month, it wouldnât be enough.
If people knew about what people are suffering with they would donate. Why does no one on here think to reach out to the public via social media and take donations⌠we could probably raise 100k a month minimum if people did this on tik tok every single day.
Instead you are expecting the people on here a lot of whom canât work, to donate enough to fund millions of dollars needed to do researchâŚ
3 million dollars is not enough to find a treatment for a rare disease my friend.
You forget PSSD has had a lot more research done and there are more sufferers due to more people taking antidepressants⌠They have nearly all the symptoms as we do, and still no advancement.
I will check back in 5 years, and you let me know where we are at research wise. Iâm not going to argue back and forth.
If you are positive that all we need is more money then why donât you refinance your house and donate 100k? Or take a loan out and give it to the foundation?
@Itookfinanddutast Hey man, so youâre probably feeling a little attacked on here by people, which I donât think is their intent necessarily. Iâm sorry if thatâs the case and I think youâre honestly just trying to spread hope and positivity to people who are in a low place. Keep in mind thereâs a language barrier between a lot of patients on here as English isnât always their first language, so things are often times misinterpreted.
Having said, there are a couple things Iâd like to address that youâve said. The mentality that a cure is decades, if not a lifetime away, is exactly the reason why things havenât progressed much in the past 20 years. Itâs pretty defeating when the vast majority of people in the community believe that and it definitely discourages any type of donating or support for research by patients. Why support any of that if you feel like it wonât benefit you? I donât think youâre trying to be negative; I think your response is rooted in you probably feeling attacked on here; which again, I think is just a misunderstanding from other members in what you said about your recovery (congrats by the way. Iâm really happy to hear youâve made such great progress over the past year!).
The PFSNetwork is currently working with leading researches in their field and the money being donated is funding the current and upcoming studies. Mitch, the President of the network does a quarterly webinar with all patients whoâd like to attend and he goes into detail on the progress being made with current/upcoming studies. Heâs also very easy to get in touch with if you ever wanted to have a personal phone call with him. The idea that weâre not on the verge of a cure or treatment is a complete limiting belief thatâs rooted in absolutely nothing. All it takes is for one funded, well researched study to determine the mechanism behind this, which would then begin the process of developing therapeutics and even a cure. Yes, there are steps in between, but this doesnât have to take decades to do. The timeline is really dependent on the commitment of the community to donate and support research. Thereâs just so much happening behind the scenes right now.
If some of the top minds in history had this âitâs impossible/too far awayâ mentality, we wouldnât have had some of the most incredible revolutionary breakthroughs we have had in the modern day- landing on the moon, development of the smallpox vaccine, mapping of the human genome, development of the internet, etc. These were all once considered impossible.
In the meantime, making YouTube videos and Tik Toks is a great initiative that anyone can take. Iâm personally in the process of doing that myself with multiple other committed patients who are ready to defeat this disease once and for all.
This isnât an attack on you, but remember your words have influence, and youâre saying the exact same thing that everyone else has said for the past 20 years, which is exactly why nothing has changed. If we change the narrative, we can change the timeline.
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Youâre right I apologize if I am being pessimistic regarding a cure. But I wholeheartedly believe if this is going to be cured in the next 5-10 years the funding from this website isnât enough. We need to reach out to the world not just into the pockets of this tiny community.
If that is done, I do believe we could see a cure soon. Hit people in there hearts and they will donate. Social media is extremely powerful, as is being able to reach millions of people. I started a marijuana technology company in 2018. I needed 400k to get it off the ground. I raised it in 3 months by crowdfunding on social media.
Had I reached out to my small circle of friends or small community I live in, it would have taken me years to raise that money. A little food for thought. We arenât in the Stone Age, things can be done much faster if we utilize the tools we have.
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Youâre totally right, man! This community alone probably isnât enough in terms of raising funds, which is why there are several VERY committed patients (including myself) who are targeting outside sources to assist with funding. Your example of your company startup is a GREAT example of what can be done in virtually no time at all. Really incredible stuff! Thatâs our intent here, and like I said, there are guys on here that are utilizing social media to their advantage to help spread the message. We just need more patients to step up and do the same, and the more they realize they truly do have a major voice and influence in this, the quicker weâre gonna raise the funds needed to defeat this.
Again, great example btw with your business. Thanks for sharing!
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I agree with exploring different avenues but this community is not small compared to other rare disease communities. If 1,000 patients gave 1,000 weâd have 1 million. This would make a big difference.
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Solid point.
The money being donated is not funding the current studyâŚI think itâs important to frame this accurately. The current study has been fully funded for over a year and is about to begin sample collection. The pace has been dictated by logistics and regulatory requirements. Whatever is observed during this project will give us an idea of how to move forward. We donât even know at this point if theyâll duplicate Baylorâs findings. Weâll know more as this progresses. The fact that sample collection is still on track this month as planned is encouraging IMO. Iâm looking forward to an update once itâs underway.
1000 people is very small considering not all of them are consistently active on here.
You are thinking on the bright side but 1000 people arenât going to donate $1,000.
We are better off getting $20-$200 from thousands of strangers around the world than expecting every person on here to give 1k.
What happenes if they donate 1k and a year later the funds are used and still no cure. We are back to square one and good luck getting them to give any more money.
That is why I believe itâs best to promote on social media and crowd funding.
There is an unlimited market of people to get donations from, and nothing makes people spend money more than guilt, or feeling bad for someone.
Definatly checking the rootcase hypothesis resulting from the Baylor study!
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Defenetly faster cure of rare diseases possible:
https://www.healthaffairs.org/do/10.1377/forefront.20170321.059289/
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Yep, most people get better with just time, maybe they donât go back to normal, but the condition during the crash generally waters down.
I see your logic. Iâm working on things that are in line with your suggestion. I think itâs worth pursuing. But itâs also important for sufferers to keep supporting as well. Both strategies are important.
Getting back to normal has to be the goal. Anything less than that is unacceptable.
This thread is so sad, one person recovers and suddently a lot of deranged users start throwing bullshit around, crab mentality, as they call it. Thatâs exactly why I donât come here so often: instead of being actually helpful for patients, this place looks like the safe space of a few lunatics, a cult of loosers.
Also, I agree with finanddutast about the tiktoks, awereness would help research a lot more than throwing money at some randos whos real intention is not at all clear, again, not saying you shouldât donate, but that people should take the issue seriously first (I remember a research who ended up trying to disprove the condition)
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If someone is 80 or 90% recovered with just enviromental factors, who is to say a 100% is simply impossible? The thing here is that every PFS case is slightly different, so those factors seem to vary. Thatâs why progress stories should be valued more, they helps us understand this condition more in practical terms.
But I agree, generally. This whole deal is unaccepatble, and we shouldnât conform with just getting better.
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