I think the best way to deal with this:

Forum rules
- Comments must be civil and on topic
- Back up claims with evidence/reasoning/sources (posting links is allowed)
- No commercials/harassment/spam
Post Reply
biopearl123
Posts: 646
Joined: Fri Jul 20, 2018 5:13 pm

I think the best way to deal with this:

Post by biopearl123 » Fri May 14, 2021 11:13 pm

I think the best way to deal with this, in the best interest of those who utilize this board, is to just publish this correspondence in its entirety. I have omitted the names of the correspondents, including mine for privacy reasons. I think these notes are self explanatory but by way of background, Fishermangents was the founder and creator of this board. I had a cordial correspondence with "Fish Sr." before his death at a relatively early age of myelofibrosis. He was unable to avail himself of Imetelstat (living in Europe at a time when there was only the Mayo study going on), but he obviously was intensely interested in it and in trying to facilitate the distribution of information to prospective patients and supporters of the company. Upon his death, his son, "Fish Jr." and I continued to correspond and Fish Jr to his great credit decided to honor his father by perpetuating and supporting this board. At that time I sent him a small donation to help offset his expenses. Fish Jr. is not a" trustaferian" and works for a living as did I and most of you. In truth, (at least to date, my retirement looks quite a bit different than I had planned thanks to events related to Geron and Janssen.) Please review his letter to me and my response. I will also forward this set of posts to Geron as a courtesy as I know they monitor this board as they do many sources, to keep abreast of anything that might be of relevance to the company. It is debatable whether we have any relevance to the company at all but at the very least I have hoped it would be a place for the sharing of ideas without being subjected to the vitriol that seems to inhabit other discussion forums (you know where I mean--the site that must not be named.) In any case, I can put any interested person in touch with Fish Jr. privately and I am quite sincere about having a new moderator or just putting the board in monetary purgatory if that looks like how things should go. Here is Fish Jr.s letter to me followed by my response:

Andy,

How have you been?

I'd like to hear your thoughts about the following.

After my dad passed away three years ago, I wanted to honor his legacy by keeping ImetelChat in the air. And I still feel like that was the right thing to do. However, lately the website's been feeling more of a (financial) burden to me rather than something that brings me joy. I'm sure that's not what my dad would've wanted.

Having said that, I would never just pull the plug without consulting you first. I know there's still a small group of members actively involved and I can imagine the board is much more valuable to others than it is to me. Unfortunately though, that doesn't come free. Costs of hosting are around 500,- euro per year. Maintenance comes in at a minimum of 50,- euro an hour. Luckily maintenance has only been necessary once in the past three years, but it's impossible to predict what'll be needed in the future.

What's your perspective on this? Do you still see the added benefit of keeping the website in the air? Any ideas on how we can sustainably finance the website?

Looking forward to hearing from you.

Kind regards,

biopearl123
Posts: 646
Joined: Fri Jul 20, 2018 5:13 pm

Re: I think the best way to deal with this:

Post by biopearl123 » Fri May 14, 2021 11:16 pm

Hi XXXX, so nice to hear from you after all this time. You are very kind to initiate this discussion. I really did not give proper consideration to the financial burdens placed on you and I think you have more than honored your father's wishes. While the website has had many visitors, the actual contributor number is low. It is possible that the website has outlived its usefulness and may not be worth the burden of continuing it as it is. With your permission, I would like to take the day to consider possible options. That you carried this site for three years honors your father's memory in a way that would have made him proud. In truth we are probably two years from topline data so approval is at least that far away. Other forums do exist for the exchange of information and you certainly have my blessing to shut the board down. I think making the situation known to those who might value the board is reasonable to see if anyone wants to make contact with you regarding support or taking over from me as moderator. We owe the board this courtesy before actually shutting it down. I also think it is reasonable to inform Geron of this situation as a courtesy. As such, I would like to forward our exchange to Geron and also to post it without any person contact information for either of us. If any board reader or user volunteers to provide the financial support you need or is willing to replace me as a volunteer, I think either or both would be welcomed and will determine the future of the board. I can be contacted via PM on the board message site. I will await your permission before seeking solutions or facilitating termination. Please let me know any further thoughts you might have. Thank you most sincerely for all the support you have provided. I do wish we had a drug on the market by now that could have validated your father's faith in this medication. With Best Wishes, Andrew XXXXX

biopearl123
Posts: 646
Joined: Fri Jul 20, 2018 5:13 pm

Re: I think the best way to deal with this:

Post by biopearl123 » Fri May 14, 2021 11:17 pm

Hi Andy,

Thanks for the quick response! Please take your time to consider possible options. I agree that board members deserve a heads-up and a chance to have their say. I also like your idea to inform Geron, I'm curious to hear their thoughts as well. As always, a big thank you for your amazing cooperation, understanding and effort. Looking forward to hearing from you again in case of any new developments.

Kind regards,

jingledsassy
Posts: 26
Joined: Wed Jul 13, 2016 4:15 pm

Re: I think the best way to deal with this:

Post by jingledsassy » Sat May 15, 2021 4:07 am

bp i have been on a free ride from the info on this website for a long time.....from Irish trader till now....the real Jingle and me have now problem with some cash to continue this forum....2023 we will get together with the real longs.....to be a part of Curing Cancer is a special Event.....

huntingonthebluffs
Posts: 190
Joined: Wed Feb 24, 2016 12:00 am

Re: I think the best way to deal with this:

Post by huntingonthebluffs » Sat May 15, 2021 7:25 pm

First, a huge thank you to Fishermangents Sr./Jr. and you for all your time, effort and continuous contributions. I personally can say that this board is the only place I care to post on and find the information and analysis provided here to be of significant value to me but quite likely expect to other members, non-members, patients, medical professionals, financial entities, various corporations including Geron, etc.

While I am sure many of the members have good ideas (better than mine certainly) to help maintain and continue with this board. That said, and maybe this is all just pie in the sky but my two cents would be to definitely maintain the board and request as many members as possible, but a minimum 10 members of the ImetelChat board step forward and contribute >= $100 annually to adequately support and maintain this board for at least the next 4-5 years. One might even include an annual post of those that are in the $100 club for each year. I might also suggest, if possible, to have Fishermangents Jr continue to provide oversight of contributions/expenses, technical resources and capabilities. Then since unfortunately you (biopearl) are deservedly ready to step away, maybe have 2 volunteer co-coordinators of the board provide oversight of members posts, new member access, overall content, etc. Of course, it would be best to have you (biopearl), if at all possible, stay on just as an advisor, as you have so greatly served as “coordinator plus” since Fishermangents Sr. passed, to help stay the course during the transition and especially over the next couple of years of excitement.

I think if Geron or any other non-member entity wanted to make a financial contribution, it could be accepted and noted in the annual post, however I would not be in favor of Geron or any other entity having any level of influence on the board as a result of their contribution.

For me personally, I would definitely offer to be in for the $100 contribution club. However, I would not offer to be a co-coordinator based on age but more importantly due to lack of medical/oncology education/experience, etc.

Lastly, someone would need to handle/advise on how to handle the actual contribution process or tax considerations, if any, for ImetelChat but probably not a significant obstacle.

biopearl123
Posts: 646
Joined: Fri Jul 20, 2018 5:13 pm

Re: I think the best way to deal with this:

Post by biopearl123 » Sat May 15, 2021 9:30 pm

jingledsassy and huntingonthebluffs, let me know if you got the PMs I sent. Since this is a European site sometimes things don't work so well. Please don't sent any money yet, I want to collect a few thoughts going into EHA and post them next week. Best Wishes, bp

rccola335
Posts: 91
Joined: Sat Sep 28, 2019 10:00 pm

Re: I think the best way to deal with this:

Post by rccola335 » Sat May 15, 2021 10:35 pm

i would help contribute

slooowr6
Posts: 2
Joined: Sat Dec 12, 2015 6:16 pm

Re: I think the best way to deal with this:

Post by slooowr6 » Tue May 18, 2021 7:51 am

I would help to contribute as well.

Zhears
Posts: 39
Joined: Mon Oct 08, 2018 12:19 pm

Re: I think the best way to deal with this:

Post by Zhears » Tue May 18, 2021 11:43 am

Gofundme allows the option to only accept the donation if the target gets reached. Could be worth doing.
This site has been the only point of sanity for discussion on the medical points and share price for these past few years and my hair will lose the last tiny bit of colour if the next 18 months don't have this input.

So, I would also happily donate.

bucbeard
Posts: 44
Joined: Wed Jul 25, 2018 12:30 am

Re: I think the best way to deal with this:

Post by bucbeard » Tue May 18, 2021 12:05 pm

I would happily donate to a GFM account.

This site is that important. Thank you BP for your insight and all you do for the ImetelChat community.

Edward
Posts: 9
Joined: Sun Nov 22, 2020 5:46 am

Re: I think the best way to deal with this:

Post by Edward » Tue May 18, 2021 3:31 pm

Sorry if this is missing something obvious, but aren’t there free message board services we could use? I’d hate for anyone to spend money on hosting if it can be avoided.

biopearl123
Posts: 646
Joined: Fri Jul 20, 2018 5:13 pm

Re: I think the best way to deal with this:

Post by biopearl123 » Wed May 19, 2021 5:35 pm

Edward, yes, this board could certainly migrate somewhere else, but someone besides me will have to set it up, moderate it and disseminate the info. For now for reasons outlined, I will be taking a break. Best wishes, bp

Austin417
Posts: 9
Joined: Wed Oct 31, 2018 9:57 pm

Re: I think the best way to deal with this:

Post by Austin417 » Wed May 19, 2021 10:03 pm

bp,

I am compelled to pass my utmost appreciation and respect to you for all you've done for all of us along the way. From never failing to put compassion for patients well before making a profit, to going the extra 100 miles to research, learn & share information and never hesitating to pose the tough and honest questions, you have exemplified a canon of ethics of which very few could ever begin to follow.

It goes without saying that your presence here will be greatly missed. But it also goes without saying that you've more than earned a break, be it temporary or for good. I've learned much from you and the "core crew" here, and I thank you all for that.

Best wishes to you and the Imetelchat family!

Semper Fi,

Marshal

biopearl123
Posts: 646
Joined: Fri Jul 20, 2018 5:13 pm

Re: I think the best way to deal with this:

Post by biopearl123 » Wed May 19, 2021 11:14 pm

Austin, thank you for your kind words. You have been a gentleman from the get go and an honor to your motto. I salute you. bp

rccola335
Posts: 91
Joined: Sat Sep 28, 2019 10:00 pm

Re: I think the best way to deal with this:

Post by rccola335 » Thu May 20, 2021 2:58 am

do we know how much time is left on this board - would be nice to start a new board - yahoo is not a great place to go

mistergern
Posts: 3
Joined: Sat Mar 19, 2016 3:48 pm

Re: I think the best way to deal with this:

Post by mistergern » Thu May 20, 2021 2:32 pm

bp - you've done a wonderful job. Thanks very much for your efforts. I would gladly contribute $100 to keep this site going.

MG

Post Reply