Monthly Fundraising Call to Action

[loops]

Hey All — as you may be aware, or may have seen throughout the forum, a collection of patients have made a commitment to contribute what they can each month to PFSN for the purposes of research.

Most folks have committed to €100 or more per month. Many have done €50 and will contribute more where they can.

We understand the financial positions of this community vary. It is crucial that not only patients of limited means, but ALL patients approach their personal networks for additional support.

I know sometimes the path toward effective treatment seems long and arduous, but there are world-leading scientists with a serious interest in figuring out what’s driving these conditions.

If we stay focused, united, and disciplined in our efforts — it may only take a little work to make big progress toward our end-goal. In the last several months alone, big progress has been made behind the scenes on awareness and organization.

So, please, please, PLEASE: help us, help each other. And contribute what you can.

June 1st begins this informal fundraising push we’ve started — and it would be fantastic if others here would join in. If you choose to, say something here to help encourage others.

Stay well everyone, and let’s keep chugging along toward a better future for us all.

[Erik]

@loops

Stay well everyone, and let’s keep chugging along toward a better future for us all.

Very well said! I’m committed to 200 euros per month but might increase this later. I’m sure everyone here can contribute something for the interests of their own health.

[Erik]

Now is really the time to begin speaking with your network/family if you haven’t already done so. Enough hiding in the shadows in daily pain. This is a legitimate health problem which needs to be tackled. Join us!

[Taw]

Last I knew, the Network donations were not tax deductible. When is that expected to change or has it changed yet? The Foundation donations are tax deductible.

[Erik]

Don’t know. We have to get more people involved in our efforts or we’re never getting out of this.

[Erik]

Come on guys.

[loops]

This is correct, @Taw. We’re working on it. 501©(3) status in the US is pending. It’s a bit of a process, as I’m sure you can imagine lol. The US IRS is not exactly known to be efficient.

That being said, we’ve submitted the most recent forms they’ve requested. And I think it’s safe to say that it’ll be completed by next tax season. Meaning, by next April US patients should be able to write off any contributions made in 2022.

Also, I don’t believe the foundation has any studies planned at all. So the PFSN is probably a more effective org to send your money. (@Sugarhouse anything to add here?)

Hope this helps, lmk if you have any questions.

[loops]

Also — just to note: we’re going to update this thread every month as a reminder to everyone. And we’ll let y’all know what we’ve raised that month.

Obviously, the more patients who contribute, the more money we can raise.

Two days until June. So, let’s pump those fuckin numbers up

[Erik]

You don’t know if it’s fixable or not. Researchers say it is fixable. We are not a lost cause and should be supporting research.

[Erik]

@Taw

After all, we grew limbs once, so we can do it again under the right stimulated conditions. That is no “lost cause” either.

You have people in here who are suicidal and are holding on to hope that research can get us out of this. Myself included. I find it perverse and sick that you come here to tell us it’s hopeless and that there’s no use us fundraising to solve this issue. Comparing solving our condition to regrowing limbs, which is a baseless claim.

Instead of coming here to demoralise and bring us down even further why don’t you do something constructive?

[espresso]

This (the original thread purpose) is a great initiative. I have had to reduce my work to cope with PFS, but I have started delivering food a few nights to commit €100 per month to the Network.

My family have also committed to a monthly contribution too. Let’s all try and give what we can so we can be in a much better position in a bit of time. Thank you for organising this @Erik @Toughluck24 @loops and of course to the PFS Network. We are very lucky to have people like you in our unlucky situation.

[Erik]

The purpose of this thread is to encourage others to join our fundraising initiative. We are making sacrifices to support research in order to eventually find a cure for this disease. Therefore, it is obviously not appreciated for you to come here and tell us it’s hopeless and that attempting to treat this will be akin to trying to regrow limbs. I don’t need to explain why this is demoralising and unhelpful.

I am not being oppressive or censorious by pointing this out to you.

[LazarusRy]

I fully understand and appreciate the purpose of this thread. Its a very good initiative that can only help move things forward. A drop in neurosteroids experienced by almost everyone to different degrees brings forward an outturn in a feeling of hopelessness irs one of the many symptoms. . Showing understanding of the suffering on here is paramount. I’ve been on the ropes many times and have come here to express my feelings and have received empathy and arms around the shoulder. Without this forum and one or two contacts I’d be lost because no one in my world has any sort of understanding of what I’m going through. At times I’ve regreted some of my posts on reflection I’ve seen them as weak and negative. This forum is a place where many will say and do things out of character because of the fucked up mess were in. Always be there for each other no matter what forgive and help don’t isolate and pick up each other because of words. We’re all entitled to an opinion. Some have left the forum that I remain in contact with and my true belief is that we let them down. Love, compassion and understanding is needed at all times. Come on guys let’s not gripe with each other

[borax]

You are wasting your time.

I’ve been on this forum for years, and once upon a time hoped that most people could be swayed into productive action if you spent enough time engaging with them. The truth is, some people cannot be swayed and trying to engage with them is mentally exhausting and a waste of your time.

Most of this guy’s posts are long winded responses that serve absolutely no purpose other than to distract. He’s got his own views with regards to this condition, and is promoting them. I don’t know if he’s doing that on a subconscious level or a conscious one, but I do not care as it is damaging regardless.

@Taw I am not sure if you are aware of this but the entire way you express yourself comes across as very disingenuous. Your statements are not directly inflammatory, but they might as well be.

@Taw

What I am saying is the odds are in better favor of saving others from our sunken ship than we have of pulling ourselves out of the hole. I am actually more worried about them than myself.

@Taw

Perhaps one day amputees will be fixable, but that is light-years away.

@Taw

Cancer is sometimes fixable; sometimes it is not.

This is essentially indirectly saying “this is not fixable” in too many words.

@Taw

This is why we have lurkers: Myself and others get confronted after going to the one place they feel safe to express themselves. Not only that, others who feel the same as me have ceased posting as a result of this. If you jump on everyone who has concerns, that will put others off.

When you get called out on it, you start to deflect blame or play stupid.

@Taw

Please, bro, don’t do that. At least she did not put words in my mouth though.

You even go so far as to try to make the other person feel like they did something wrong for calling you out on your behavior.

@Taw

though I apologize from my heart that I rubbed you the wrong way, but I do not feel I said or did anything wrong.

Then you top it off with an apology that basically sounds like a “sorry not sorry”. Any apology doesn’t mean much if the aggressor hasn’t really understood the way their actions have negatively impacted someone. You might as well not say it because it’s confusing.

It is unfortunate that this is harsh and is probably going to upset you, but these things need to be said so that people do not lose focus of what the goal of this post is. I am pleased to see members of this community starting to take the effort to do their bits and encourage others to do the same. I will not allow people like you to undermine it in any way, consciously or unconsciously. If it is unconscious, do some self reflection, come back, and feel free to join us.

Also, I’m good to donate $100 this month. Feel free to contribute whatever you can afford to to demonstrate your sincerity @Taw.

[loops]

Sooo…this thread got a little derailed. Just for other folks reading, I want to clarify a few things:

1. We don’t want to pressure or harass people for donations. Patients here are impacted to varying degrees and, as such, have varying degrees of financial security. Nobody should feel like they have to give more than they can.

2. This forum is a safe space for everyone, and I get that some patients just need to vent.

3. Lastly, we’re all suffering here. To varying degrees, but we’re all suffering. And it sucks. There’s no sugar-coating that part. It totally sucks. So let’s try to be empathetic and patient with one another.

If you can contribute, great. A group of us plan to the first of every month. Other than that, just try to stay well everyone

[Erik]

Well said.

[borax]

No one is proposing that people give more than they can afford, but on the flip side, the environment on the forum been very conductive to a bystander effect for a long time. We have traction and hope for the first time in a long time, and I think it’s important to nudge people towards doing their bit rather than accept complacency.

One of the administrators of this website is someone I have been friends with since the beginning of my journey with this condition. He is severely affected, and has arguably done a tremendous amount more than all of us have together. I think many of us owe it to him, the other administrators, and ourselves to simply do our best. Which is why I choose to encourage initiatives like these, and discourage opposition to it.

I want to get out of this mess. I have been dealing with this for almost 5 years now. I first got sick when I was 18. My symptoms extend beyond sexual ones, which on their own can be very difficult to deal with. I’m unfortunately aware of the fact that in the absence of a resolution to my symptoms, I will not want to live. Realistically, the most likely way for this to happen would be through scientific research and understanding. Anything that gets in the way of that or attempts to sabotage it, intentionally or not, is frustrating. I certainly will not tolerate it, and don’t believe we as a community should either.

[Taw]

Guys, my intention for posting here was to seek tax related information, nothing more, nothing less, so that is how I’d like my presence to end. Everything else that followed was neither my desire nor intention.

[Northern_Star]

Let’s now focus again on the original purpose of this thread: Who is willing to commit to a monthly donation?

[Erik]

I spoke to Borax and he will be joining us as well. It would be great to see more people from this forum join us.