Sugarhouse new member story

bad news, for you,for us.
Do you have anything want to eat? Maybe you can send me an address and I’ll order something delicious for you. :slightly_smiling_face:

6 Likes

Sorry to hear, I was sick for a couple weeks last month and could barely breath. It sucks wanting to get back to just having PFS.

Haha thanks guys but my cupboard is fully stocked. Very kind of you all though.

Neither my brother, my wife nor I were vaxxed when we had Covid last November.

My wife and I had headaches; mine were worse than usual, but we had no respiratory problems and retained our taste and smell. We were over it in 5 days.

Meanwhile, my brother was in a hospital for a week and barely escaped intubation. He then spent a week in a nursing home for rehab. His present condition leads me to think he may have “long covid.”

My point is that covid and its effects is unpredictable. Hopefully you will get healthy quickly. Jim

7 Likes

Hello all,

I am doing better and recovered from COVID. Just back at work now and getting adjusted to my new job.

It has been tough feeling like I’m ignoring the community a little, not being as responsive, but I know this is a marathon not a sprint and that things are still moving in the right direction.

Thank you for the idea. A dinner in Australia typically costs about $25 delivered! It all counts!

6 Likes

I thought I’d update as I haven’t been around in a little while. I have been trying to keep people updated as best we can about our efforts via our mailing list and Twitter - so if you haven’t signed up or followed us and want updates, please do so.

Adjusting back to a full-time work schedule has been challenging, but I am finding it good for my sanity to have something to focus on other than moving this issue forward. At the same time, I do have a nagging sense of guilt that I am not fully engaged as I was six months ago.

However, I’ve been trying to remind myself that this is a marathon not a sprint, and with the issue now in the hands of scientists our role at PFS Network changes. While everything a year ago was a sprint to push this massive boulder up a hill to get things started and I’m grateful that’s not the case anymore.

Finding suitable collaborators to help with sample collection has proven challenging, and as someone without a background in research, I underestimated how complex the whole process is. From writing ethics proposals to finding the right people to figuring out how and when everything will happen, it takes time. We’ve found a suitable collaborator and we hope that we’ll have ethics approvals done soon and can finally move onto sample collection. Nothing concrete yet, but things are moving forward.

Personally, I am doing ok. I have settled in for the long haul and am extremely grateful that so many people have been so supportive of our work, and that we have the best of the best scientists involved. If I haven’t been as responsive to you lately, or active around the forum, I’m sorry.

Much love,
Mitch

12 Likes

Mitch,

You will never realize how people loves you and the job you’ve done. Has been just wonderful. You changed this community forever and brought hope to all of us.
Thanks for all your effort you put on this.

7 Likes

Mitch i love you, u are wonderful guy.Thank you

7 Likes

No apologies at all brother.
You have to take care of you too

1 Like

Been very busy lately with work and preparing everything for ethics proposal. Worked 4 straight 14 hour days last week trying to get a clinical survey ready, in German, when I don’t speak a lick of German. Fun times.

It’s positive to see people continuing to support and the number of monthly donors continue to trend upwards. At the moment there’s a lot of planning and back office admin to make the final push for our first study. I will be extremely relieved when it is underway and take comfort in knowing progress will then safely be in the hands of very good scientists.

Also, if someone knows how to bribe the IRS to speed up our 501c3 application, I would be extremely grateful :laughing:

Symptom wise, not much changes for me over time, except when I am overworked or particularly stressed as was the case last week. I probably need to take better care of myself but that’s easier said than done.

I hope you are all doing the best you can.

13 Likes

Yes, sorry you’re in trouble to do that all for the entire PFS (and maybe the related pssd) community (too). I feel ashamed that
I’m a microbiologist and I’m from Germany. and haven’t offered my support or only to speak up public.
But this is the disease. I can’t even pay a bill online without my supervisor or buy some simple shoes or a shirt without support. I’m care level 3 after 15 months PFS.

1 Like

Doing God’s work, Mitch.

7 Likes

So how you can writing here?

Really appreciate all the effort man. I’ve sent some deep fried donut pizzas to the IRS office so it should be imminent now

5 Likes

If we was total ideots from the drug we would feel better than being lobotomized.

How many donors have currently?
How has it been such trend the last months?

Individual donors are up over 200. The trend has slowed, however that was always expected after the first study was funded.

Of course, we’d love if supporters could set up a monthly donation but understand it’s not always possible.

Thanks all for the well wishes.

3 Likes

What’s happening with current donations?

1 Like

Do you mean where are current donations being directed?

Everything we raised over the €80k remains in our bank account - it won’t be used for anything other than research. We don’t have any large operating expenses and things like the cost of hosting this forum, our website, etc all come out of staff funds, not the charity.

6 Likes

Personally, I haven’t set up a monthly donation although I donate every month, since some months I can donate 100 Euros, other months 200, depending on my economic situation.

Just donated another 100.

7 Likes