Sugarhouse new member story

[Wintermoon]

I think you should accept the job offer 100%.

You can’t know if it will work out unless you try, and the progressions of the PFS community shouldn’t be resting so partial on your shoulders and efforts anyway. I think it’s great that you’ve been able to do a lot, but I think it’s healthy to have a normal job with PFS.

I don’t really know how much you’re doing that I never see or hear about on here, so I don’t have a good picture of how much work would need to be postponed or maybe delegated to someone proficient.

But my point is that there should be answers to that kind of issues and I think you shouldn’t feel guilty about making a good decision for yourself.

[Exsexgod]

I don’t want to negligent a job chance for Mitch. I just wrote down my spontaneous feeling.

[Devon]

Take the job.

But keep in here too. It’s a hard blend but like @Wintermoon said it shouldn’t souly be on your shoulders to drive it forward.

Someone else here can and should probably pick up the slack.

You’ve done so well with being involved in bringing the network to where it is today. But don’t let that tie put you off taking another opportunity which could also impact your life for the better.

[LazarusRy]

My heart drove my initial reply. Do what’s right for u. we’re all indebted to you regardless. Keeping a hand in and delegating could be the compromise. You started rolling the snowball, it’s getting bigger. There are some very intelligent guys on here who still have functionality who can keep it going. Everyone has a part to play in this. I push the awareness with losing my skill set… I feel it adds value we all have something to give. Everyone doing something could make a huge difference. .

[Capello]

Dear Mitch, my two cents:

are you thrilled about the job offer?
If so, you should take it.

Also, would you be able to quit that job if things don’t work out and
be able to go back to where you are today, economically speaking?

If so, it’s worth a shot.

As I said, my two cents.

We want you to live the life YOU want to live at this stage.

Having said that, I just want to say how much I appreciate what you do for us.

[Titan1]

I think you have to do what feels right in your heart.

You have already done far more than could ever be expected from any member of this community and often I am sure it feels like thankless work. I am sure it’s often frustrating to feel like you are battling so many forces out of your control including members within the community itself. This was never going to be easy. With that said the amount of progress that has been made in the last year since I have had this disease has been nothing short of remarkable. I don’t think anybody could have done better and selfishly I wouldn’t want to lose your time and commitment to keep PFSNetworks momentum pushing forward. It has helped me tremendously along with our chats. My hope is that through further marketing initiatives and outreach that PFS Network becomes to first resource that new patients find which strengthens the support group and leads to more donations. The biggest hope is in landing a big fish who could finance a huge chunk of our research initiatives. My biggest fear is that PFS Network will be abondoned sort of like The Foundation and some of the other start ups. I know you would try your hardest to keep things afloat, I just wouldn’t want to see you get burned out. It would be great if another like-minded person with similar skills could help you out.

However it shakes out, we are all indebted to you for the work you have done. Hopefully the research project yields us some really good insights and people continue to donate. I’m sure the youtube content has saved lives. I wish you nothing but the best Mitch.

[Sugarhouse]

Thanks for all the replies and kind words. I haven’t made my mind up yet and please know that I would still be able to dedicate 1-2 days a week to keeping things moving forward.

The next big progress point that requires all hands on deck will be when we have results from our first study. There will still be a season two of the podcast, a series of articles analysing the patient survey data, networking with media and clinicians, and some other milestones, but the big progress is going to come off the back of scientific data. It’s really important patients understand the doors that meaningful results open up, in terms of visibility and recognition, plus eligibility for significant grant funding.

Right now, we are limited in the conversations we can have, and the speed at which we move, with the funding available. Unless some major donors come along, it’s likely the next big research/fundraising drive will come once we have results.

I think I can still manage the other work in the meantime and also earn some money to contribute to future projects.

[sg8627]

Dude ya gotta take it

Don’t make me get on a plane and fly over there and get some sense into ya lol jk

Seriously. This Opportunity presented itself for a reason
You’ll still be able to do your thing on here in some way I’m sure

[Sugarhouse]

Been a couple of weeks but I’m doing a bit better symptom wise. It’s hard sometimes to recognise the good and bad days through the drudgery, and because I’m working so much on moving things forward, but today I wasn’t as busy and realised that I felt energised and clear-minded for most of the day.

There are more promising things coming in the next few months which I can’t wait to share with everyone. For the first time in years I really feel like things are moving consistently in the right direction. So great that more people are coming forward to speak on next season of the podcast.

If you had told me two years ago we would have had 10 patients speak publicly, plus another five lined up, there is no way I would have believed you.

On the work front, it looks like I should have an official offer next week. Will mean I can’t spend as much time on PFS Network, but it’s a “startup lottery ticket” (as @M_C calls it) and could mean a life-changing amount of money in the future.

Who knows. I have to try.

[Exsexgod]

It’s good that you take your chance. But I’m afraid that Propecia Help and PFS network than not going on like under your full time period (together with Axo and others in the background).

Are there someone in sight, who has the courage to show his face always in public and the knowledge to act as your co anchor man, when you on a full time job?

Just a question, because it is so helpful to have some strong leader who leads us through our suffering, gives the young victims hope for a cure and there are a faces connected with awareness campaign and research activities.

[LazarusRy]

Good points @Exsexgod echos my thoughts congrats Mitch @Sugarhouse an opportunity you can’t pass up

[Sugarhouse]

A quick update: I’ve had COVID since last Saturday. It is not fun, especially for someone with PFS. I’ve had my booster and I’ve still been in bed for almost five days now.

The fatigue and muscle fatigue is crazy. It’s really compounded my PFS symptoms. I’m just hoping it’s not a long-term thing, but most normal people who I’ve known with COVID have said it took a few weeks for the fatigue to subside.

If you aren’t already, please get vaccinated. I would hate to see what COVID could do to a patient who isn’t.

[Ultra]

I’m sorry the booster didn’t prevent it. Wishing you all the strength you need to beat this shit and recover. Get well soon!

[baitongWu]

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.

[mstone]

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.

[Sugarhouse]

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

[JimWildman]

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

[Sugarhouse]

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!

[Sugarhouse]

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

[finaduta]

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.