Thank you very much. I may take you up on that offer. As for the updates, will they be posted on the forum, sent via your newsletter, or both? What is the best way? Should I check here everyday or just keep an eye on my inbox? Sorry to pester, just anxious.
Pfs network does a great job! They are my only hopeā¦
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Thatās yet to be decided mate but once the study gets underway weāll tackle that. Rest assured youāll all be updated as soon as we are.
I seem to have totally missed this. Iām near Schleswig Holstein, sort of. Do they take new samples?
They donāt need new samples for this study as weāll be using samples collected in a previous study. If we require new samples weāll put up a post and send out via our mailing list also.
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Thanks to some generous contributions over the past week, weāve now raised 16,400 EUR towards our 200,000 EUR target for the year.
Please continue to support where you can.
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friend, but will all the researchs be done on discovering the mechanisms of pfs and none on studying possible treatments or cures?
Curious on a reasonable timeline to get all the tissue samples.
Is there a time frame here?
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friend, but will all the researchs be done on discovering the mechanisms of pfs and none on studying possible treatments or cures?
At this stage, our most urgent priority as patients should be identifying the mechanisms involved in PFS. We canāt study possible treatments or cures with any accuracy without a pathomechanistic model which allows us to objectively validate whether a treatment/cure has an effect on the disease.
Curious on a reasonable timeline to get all the tissue samples.
Is there a time frame here?
Unfortunately not, weāre at the āuniversity bureaucracyā stage. The good news is weāre ahead of schedule anyway, as we didnāt anticipate to finish fundraising so soon. Weāre in constant communication with all parties involved so once we have updates weāll make them here.
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I was able to make another donation today.
Canāt stress how important is it to continually donate to PFS Network. They are by far our best hope for a way out of this mess.
I truly believe if we continue to support these researchers that we will have some major progress in the coming years. I am in such severe agony everyday that I likely wonāt be able to see it through but atleast Iād be able to die knowing that the disease is in good hands and I expect there will be vindication at some point when they figure this all out. Likely leading to large litigation payouts and further research into targeted therapies.
Just the content alone that PFS Network puts out has been extremely valuable and I know a lot of work goes into it. So my utmost thanks again to Mitch and the team involved! Keep up the good work!
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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 Iād 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 Iām 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 canāt believe what we as human beings can endure to survive. With a treatment weāll 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 youāre an extremely strong lad. Youāve 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 Iāll step up to keep the steam up. Weāll get out of this and will live to tell our stories and most importantly live a fulfilled life.
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Laz youāre a big inspiration to me. God bless you friend
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I have set up a $100 monthly recurring donation. Happy to donate more when there is a specific need.
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Donated another ā¬100
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We are pleased to inform you we have now raised ā¬21,100. This includes ā¬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 ā¬66,000 - well short of our ā¬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 ā¬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 ā¬7500. Further contributions from family and personal networks account for ā¬18,000. That amount represents a quarter of the total funds weāve raised.
If everyone on our mailing list asked their immediate family for a ā¬250 donation, we would raise ā¬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 werenāt 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
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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 ārich men cardā. 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.
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Hi there,
We do have a European bank account you can deposit into directly. Please PM me for the details.
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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.
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