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Data: our way out

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Hello everyone! I want to start off with thanking this community for being there for me for the past 7 years. I could not have made it without all of you....


...but I am still suffering. And many of you are too. how do we fix this issue? 


first, we need to analyze why we haven’t found a solution yet. Because that is the real problem—not what is wrong with us- but why can’t we find the answer? Why won’t anyone help?


i believe the answer to that question is two fold:

1) lack of interest due to “Rarity” of this disorder (in reality I think we are just the worst on the spectrum that is this negative neurological event)

2) lack of data


so how do we spark people’s interest? Because it’s all about finding how to get the people we need to feel like they want to be engaged. We solve both problems by solving just #2.


Like most things in our digital age I believe the answer is DATA. If we can harness the tech at our disposal now, which was unavailable even a few years ago, we can start to garner more interest in this condition. We have the platform and user base already to drive engagement from scientific communities. Usually you have to FIND these people out in the world if you want to study something. 


Genetic testing has become readily available to the public. Companies are starting to amass a large enough data set that we can use it to our advantage. We need to start compiling our genetic info and comparing it to each other. This will enable us to find commonalities in systems in which our brains and bodies operate. 

Once we can find a commonality, we can garner interest from the scientific community better. 

I personally think we should use Self Decode platforms, as I have found their tech to be suited for this.


So where do we go from here? What can you, the unlucky soul reading this post, do to help?

1) get your genes analyzed. You only need genetics NOT ancestry. 

2) upload the data into self decode. 

3) share data with each other. 

4) Find genetic commonalities between each other’s genes

5) compile data, push to research systems around the country to garner interest.


cost per user: roughly $350 one time fee. $100 for genetic raw data and $250 for lifetime membership to self decode (I think this is still offered; this is what I paid total). 

It feels like a lot of money. And it is. Especially for those of us who are struggling to hold down jobs and make ends meet because of this horrific disorder. But think of it this way—this would have cost millions of dollars to do just 20 years ago. It wasn’t possible at all then. We have been given an enormous opportunity today.

I hope this post helps encourage dialogue and action. No one is going to save us; We must be the catalyst for healing. If not, this idea is at least here forever should someone one day be brave enough to pick up the torch. 





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