Urgent - opportunity to help our community project cheaply


#21

You only need the ancestry test for our study.


#22

But I mean from ancestry.ca


#23

Huh, I don’t know.

Does anyone else know?


#24

We need the 23AndMe data-set for the study. This is the data in use, and users have bought, so hopefully you can join in.


#25

Purchased, just waiting for the delivery! Should someone make a Black Friday post about how it’s on sale or is that annoying ?


#26

that’s the one buddy and you only need to choose the ancestory option.


#27

I often feel a bit helpless in the fight to find a cure for pfs/pas, but I donate to the foundation regularly and contribute to this forum.
All I can say is that by contributing to this project we all have a chance to directly help the research for a small amount of money and you also get to find out about your own family tree by getting the ancestory report which is an added bonus.

The people organising this project and everyone who gives their dna data are heroes.


#28

Thanks for contributing to the project! This is great. Thank you.


#29

After reading Awors post a second time then looking by myself at studies, most studies have thousands of samples. The ones that have a large sample size (n) are the most successful studies and are the ones with the most citations by other researchers and are in the best scientific journals. We have about 50 data sets right now according to Awor. While it’s better than nothing, we really need to pull together as team. We absolutely need to give this a shot and try to pull together much more raw data results from the members on here.

Imagine this, we pull together 500 data samples. Awor and Axolotl run the data through the high tech software. We start seeing variations that stand out through the statistical noise. We check out the SNPs. Some of the SNPs suggest a strong genetic/epigenetic component. This would be huge. It would launch us forward in terms of funding. We all know it’s going to take a lot more money to fund studies for a treatment if Baylor comes through. The NIH has money. If our community provides some kind of possible evidence for a genetic predisposition then the NIH will fund it or partially fund it at the very least.

Please consider spending $60-70 on getting a 23andme test kit. We all complain here but this our chance to do something about it. I will say it point blank, no one will care much about this if there isn’t any definitive scientific evidence. It’s sad that we obviously suffer many visible side effects but doctors and scientists won’t care. There’s too much money involved from 5ari and SSRI sales and too many politics. This is our chance.


#30

Well said - this is exactly it.


#31

I’ve been thinking this over guys, and I think we should have an ambition to get 500 data samples, but with a realistic ambition of getting 200 as soon as possible. I’ve thought of some ideas.

  • We could e-mail all users about the 23 and me project with a link to 23 and me and explanation of what we are trying to achieve.

  • We could have a running total of the number of data sets we have and the target somewhere prominent on the website.

  • Contact Dr David Healy at Rxisk as he might be able to add the information about the project on his blog. If anyone can add the info on Accutane forums as well. Perhaps even the pfs foundation could add it to their website.

  • Maybe set up donations to pay for the kits for people. If it meant that we got closer to the 200 data sets, I’d be willing to donate.

  • If everyone contacts their pfs buddies and keep nagging them to do it.


#32

I think these are very good ideas. Maybe its not only possible to not only email everyone but to to send everybody a private message in this forum as well…


#33

I spoke to my friend @irishguy754 and he has ordered a kit, so one more dataset on its way.


#34

OMG CYBER MONDAY SALE FOR ANCESTORY KIT AT 23 AND ME!!!

£44 in UK
$59 in USA

Guys its not going to get cheaper than this, lets do this.


#35

there’s 7 more hours of this sale. i find it slightly baffling that we don’t even have 50 PFS genomes and we have plenty of people with PFS on this website who would rather spend money on experimental treatments (which i have nothing against) than spending money on something could potentially fund a cure so you don’t have to treat yourself anymore. this should be a high priority. i apologize if this is coming off a bit aggressive and what not but it’s really sad we do not have more data sets submitted. it seems to me that people would rather complain and post about it than actually do something. $60 bucks is doable come on guys, please consider it


#36

Maybe make a new post about it ?


#37

if people want me to i will


#38

Great post buddy. You are totally right about this. I’m astonished more people are not engaging with this project. I know it will take 4 weeks or so for the data sets to start coming in as you have to wait for 23 and me to send the data once you have sent in the sample, lets hope that by the end of the year we have the 50 data sets.
I think 200 data sets should be an easy target for us to reach if only people will play their part.


#39

if people played their part 200 would be an easy goal, 500 would be a challenge but still achievable. but no one wants to be proactive and take action. guys would like to sit on this forum all day and talk about their side effects and try things that may or may not work to improve their symtoms rather than looking for something that can be causing this.

i understand people have bills to pay, and others to take care of. but like i said this should be a massive priority. I feel like people genuinely don’t understand the importance of this and that’s why kits aren’t being purchased.


#40

I think you’re right, @gents93.

It would be good if people took a long view on this. We’d all be better off in a couple of years if we could advance the science, instead of paying for blood tests and bags of herbs or whatever snake oil is being sold.

It’s possible that we could all be free of this if we pull together. If we all try and run our own projects at the expense of the group effort, we’re less likely to succeed.