Every day has been an absolute uphill challenge these past few years. When i discovered what was happening to me and I realised the nightmare of this i really thought I’d die from pfs within months. I was already upto my neck in sides. Inability to think, sleep, physical decline, loss of social standing, everyone turning their back on me, inability to connect, isolation, etc. That was 4 years ago @Titan1 and I’m still here. In another two years we might have some answers, even treatment options. So hang on in there, at its worst its pure pain both physically and emotionally, robbing us of our identity. But uts unlikely we will die naturally for a number of years., I can’t believe what we as human beings can endure to survive. With a treatment we’ll be back like former champions of the world. Many of us have seen brief turnarounds even when at the brink. So hang on in there you’re an extremely strong lad. You’ve soaked up so much these last few years and always manage to portray a positive outlook regardless of your suffering. Well get there we really will. When the next stage needs funding I’ll step up to keep the steam up. We’ll get out of this and will live to tell our stories and most importantly live a fulfilled life.
Laz you’re a big inspiration to me. God bless you friend
I have set up a $100 monthly recurring donation. Happy to donate more when there is a specific need.
Donated another €100
We are pleased to inform you we have now raised €21,100. This includes €10,000 in PFS Network staff contributions to kick-start this new fund.
While we are pleased with this progress, unfortunately at this pace we will only raise €66,000 - well short of our €200,000 target for 2022. This amount will almost certainly not be enough to begin another project.
Scientific progress towards a safe and effective therapeutic treatment can only occur through community support, and the speed at which we can progress, is limited by the funds we have available.
Personal networks
We recognise you may not have sufficient personal funds to contribute more than you already have. That is why we are urging you to reach further into your personal networks for support.
We cannot solve this problem alone. We urge you to be brave and not allow the stigma associated with PFS to hold you back.
@Titan1 created a thread recently about how a friend had set up a GoFundMe on his behalf using our GoFundMe campaign template. He was amazed his friend had raised over €2000 in less than two days.
This is a powerful example of how our family and personal networks can help us accelerate towards a safe and effective treatment.
So far four patients have taken advantage of our GoFundMe campaign and collectively raised €7500. Further contributions from family and personal networks account for €18,000. That amount represents a quarter of the total funds we’ve raised.
If everyone on our mailing list asked their immediate family for a €250 donation, we would raise €52,000 overnight.
That would be a significant boost towards our next fundraising target, and increase the chances we could begin another PFS research project in the next year.
Reach out for support
In a recent survey, over 68% of patients said they weren’t comfortable asking their personal networks for contributions for PFS research. Of those patients, 70% said it was because they were too embarrassed, or that the situation was too complicated to explain.
If you are worried about asking your family or personal networks to contribute for either reason please get in touch. We have recently developed new resources including fundraising presentations to help you navigate these difficult conversations.
We should not be ashamed or embarrassed about what has happened to us, or intimidated by the complexity of the subject matter. There is now enough scientific literature, patient stories and resources to support the existence of PFS, and create a simple, compelling story for our loved ones.
Our efforts to find a safe and effective treatment can only go as far as your support. We encourage you to reach out and get involved.
With gratitude,
The PFS Network team
You are an absolute hero Mitch. You will be a better place than you could ever imagine one day!
Please would it be possible to please create a IBAN/Swift account to gain more founds . Specially in Europe not many people use Visa/Mastercard. Also paymethods like Klarna and PayPal are more commenly used here than Visa/Mastercard. Visa/Mastercard have the stigma to be a “rich men card”. Because they think the Gold/silver/platinum options are the standards and that it is included with the extra insurances and therefore more money to pay for the card.
Hi there,
We do have a European bank account you can deposit into directly. Please PM me for the details.
Just donated another 100 Euros. Wanted to bump this thread in order to remind others that we
should keep donating regularly to be able to finance further, future research.
Have a nice weekend and stay strong.
Followed @Capello’s lead and donated another 100 in addition to my monthly reoccurring contribution. Thanks for your hard work PFS Network!
I have been signed up for a monthly 50 euro charge to the PFS network for three months now.
How do you turn off recurring donations?
You’ll need to cancel your order on the PFSN website.
People are dying but we still struggle with the bureaucuracy wth, we are starting our hope!
I went to donate and signed in to my pfsnetwork account and it wants you to donate more but I don’t see anything about turning off recurring donations…
I’ve done it on your behalf now.
I personally promise to raise another 5000 euros for this year’s donation activities, and I will pay it in a lump sum at the end of the year. I will think about how to pay cross-border.
(keep this post to encourage me to work hard to fulfill my promise，To be honest, it’s really not easy for everyone to make money，For the vertical Rooster（cock）！)
Are the researchers discussing possible therapy? Do they have a means to treat patients? How many more studies do they think they need until they can provide any treatment? I’m just asking as someone who got sick when the studies in Italy started 11 years ago, participated in the Harvard study, and still waiting 11 years for some hope.
It’s nonsense that victimized patients have to fund research. The drug and supplement companies and their ilk should be funding it. Outrageous!