Are any of the new research projects going to overlap with what the Baylor project is doing?
Hi @lakehouse do you mean will we be working with Baylor, or will the study designs be of similar nature?
the objectives of the study.
are they capturing similar data to baylor? or different?
Unfortunately we can’t reveal that just yet @lakehouse as the researcher is busy with other projects for a couple of months.
We will inform the patient community as soon as we can, but this post was intended to share the initial good news with the group, and to ask all patients to start thinking about what they or their families could contribute when the time comes. Most likely in the Summer.
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OK, so bottom line - if you’re planning to donate a significant sum, donate specifically to this new initiative when the time comes. Meaning - not the PFS foundation or the PFS network?
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Almost @M_C. Although the likely projects will be arranged by PFS Network (PH admins), in collaboration with the researchers who will design the study, the fundraising will be conducted through the Foundation.
Since PFS Network is not a registered charity, we will not fundraise ourselves. Setting up a nonprofit is an option for us, but more and more organisations are unnecessary when we have a longstanding cooperation well with the PFSF. So when the time comes, we’ll be using up a ringfenced fundraising account with the Foundation and they will administrate the funds. However, the funds will need to go through the specific links we provide here as the PFSF will be setting up a second account to earmark these funds for the studies.
TL;DR. Hold your dollars for now, and when the time comes, we’ll let you know how you can donate to this exciting new study. All plans will be fully outlined beforehand.
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Okay fair but I’m curious
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would this study be private and deliver results very fast?
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would this study at least potentially help us get closer to finding therapeutics?
Given all the fervour surrounding Baylor and other studies in the past, I don’t think it would be wise of me to say anything further unfortunately. We will provide full details at the time - this is just a heads up there will be an opportunity we’ll be supporting in the summer.
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Excuse my ignorance, but what would be the point of fundraising future studies without a. Knowing whether the Baylor epigenetics study will come out, and if so when and b. What will be contained within the study.
Fair point man, but we’re at a point whereby we have to move on, with our without Baylor. If Baylor comes out and reveals something significant, great. If it doesn’t, we continue as we are.
There’s also the aspect of the relevant technology being much more advanced and also cheaper than it was at the time the Baylor study was initiated, so continuing in this direction will hopefully yield far more detailed and reliable results.
Something similar to CRISPR?
Also thanks for addressing my questions, I thought maybe you admins knew something the rest of us didn’t but it doesnt seem like it.
Not CRISPR, no. CRISPR is not yet widely available to the public and is a gene editing technology, not a diagnostic tool.
I assure you man, no moderator knows anything about Baylor. There’d be absolutely no reason for any of us to keep any info regarding that study to ourselves. We’re as in the dark as you are.
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Thanks for replying again, could you tell me the name of this new diagnostic technology?
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You mentioned interviewing clinician in your post; I haven’t seen this doctor’s video posted on the forum yet. Maybe you could get in contact with him?
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Thank you…you have my support when contributions are needed.
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Any updates on when this will get started?
Not yet. But talks are ongoing and progressing well. We have several projects in the pipeline and hope to have more concrete news soon.
I know it’s frustrating that it takes this long and updates are scarce, but these things move slowly as all people involved have numerous commitments.
But so far so good. Stay positive, be patient and if luck is on our side for once this year could still become fairly eventful!
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Hey!
Still no news here?
Any hopes of getting an actual government funded big league kind of study going?
There will be an update soon. We’re hoping to finalise one study which will be funded solely by the PFS Network team in the very near future and additionally we hope to announce fundraising plans for a larger scale study with that.
A lot of exciting progress has been made as a result of the hard work of Axo & Sugarhouse of late and we’re hoping to capitalise on that.
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wow this is great news!
our mods are cold blooded killers (its a compliment 
)
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