I just donated 50€
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Thank you guys for all the support!
I wanted to make a quick note about the communication issue. As the person at PFS Network running our awareness and fundraising strategy, I am acutely aware of the challenges we have communicating with patients en masse. There are some behavioural reasons for this - the way patients engage with this forum tends to be cyclical and they are not always active or checking messages - but also the community is unfortunately so fragmented and difficult to reach.
We also cannot put custom banners on the forum without significant web development effort, which we just do not have the time or resources for. We are also unable to send mass mailouts to the emails of users due to GDPR regulations, and the fact that until recently, users do not give us permission to send them marketing emails privately. As a registered charity, we need to be very careful about compliance, so we cannot break the rules.
That is why we are trying to build our website mailing list as a primary awareness objective and use that as our primary means of communicating with patients and their families. It’s currently about 150 subscribers, so not many, but it is growing every week. If you are not subscribed, please go to the homepage of our website - pfsnetwork.org - scroll to the bottom of the page and sign up. It is much easier to communicate this way so we encourage you to sign up immediately.
The other very impactful thing patients can do is communicate what we are doing with other patients they know outside the forum, or create a message of support. It is one thing to hear what we’re doing from our group, but validation from peers is always a good way of communicating that something is worthwhile supporting.
Please do not underestimate how powerful individuals can be in communicating our message and influencing others to become supporters.
Thanks,
Mitch
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基金会是一个确确实实的“慈善机构”，它给予的是“仁慈”，我们需要的是真真切切的“拯救”，再这一点上，只有患者自己能够帮助自己
Yea call Phil Robert’s and he’ll give you mercy 
Like the above poster said you will feel worse after talking to him…I would advise against it if anything couldn’t be more rude…
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$2,050 + $2,050 = 4,100 confirmed raised in 4 days. More likely much more than that. Keep going guys! Lets get this damn thing started!
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is this confirmation from your network or the community in general?
either way great work
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The foundation was set up with the sole aim/objective of getting the drug removed from market. Philip Robert’s is not a sufferer that I’m aware, I might be wrong but what he does is on a volunteer basis only and in his spare time. He doesn’t get paid or anything doesn’t have an office with staff working for him. He is one man. When you realise this (i was shocked) u then appreciate what he actually does but it also shows why the dial never moved much for years. Despite this he does a great job and strives to push awareness via the media and probably much more. Thanks to Mitch, Axo and co were stepping into new frontiers
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Wow only one man? No wonder things went so slow all those years…
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UP! UP! We all must donate! Do you want to lose your next 10 years? If no! Don’t fukin wait! go and donate!
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That number ($4,100) is just from the posts in here. I know the number is higher because I’ve had guys text and email me that they donated as well.
@Sugarhouse can probably give us a more accurate idea once he looks at numbers.
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月亮你真是个伟大的家伙，鉴于你已经拥有一个假体公鸡后过上了快乐的生活，且没有其它问题，我为你所做的一切深感钦佩，希望我最起码能过上你这样的“性福”生活！
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I truly don’t wish PFS on my worst enemy. I also am fearful that my son or future grandsons could someday get PFS if we are genetically susceptible to it. No stopping till we find a cure!
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UP UP! Let’s donate.
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This post has been active a week. Can we get an idea of how much the fund has increased since?
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I am sorry that I am a student without income 
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Keep continue to donation guys.
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Hi all,
We gave an update in our end of year message. We’re just under 47,000 EUR including the donation match.
Merry Christmas.
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Apologies for the delay. Just donated.
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Money is tight for me at the moment but I will donate something either over the Christmas or early next year.
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Donated 100 Euros, will donate more when I can.
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