Start of new HPPD project - we need you!

[onelovez]

Hello.
 

Me and Pinionlel are starting a new project on HPPD, to which we want to dedicate ourselves. The main goals of the project are to improve the experience of people affected by HPPD, by looking for causes, existing and new solutions, by collecting as much data as possible and providing it in one place (clinical studies, peoples experiences etc.). We want to establish a research group that will be studying all the information gathered. Also we want to be spreading awareness and providing some support if possible. Right now we gonna work with tools we got, but later we want to make a website about HPPD, which will fulfill the above goals.

 

We have a great faith that this condition can be improved. There is many things that haven't been tried yet or that have been tried and did help, but not many people are aware of them. We, the HPPD community, can't count on anybody else solving this problem for us. Its the time we should take it into our own hands.

 

Right now we are looking for few individuals interested in participating in creating the foundation of the project. There is a lot of things to be done. HPPD is a very complex subject, but if everybody gives a little bit we believe we can make some great progress. 

 

Firstly, apart from establishing some methodology of work, we need to work on the way in which the data will be collected.
Just to fill you in, these are the templates we work on right now:

https://drive.google.com/open?id=1sYER4Jpt2ONGjHriOuNXCasWMm3pzIdtGOZJl2dRAC0&authuser=0

https://drive.google.com/open?id=1FeX_Nkr1Q10vpamnNORqwiJllecOGj-9O_dnepzQ6CU&authuser=0

 

Once we have the templates polished, we can start getting people to fill them out. It is going to give us great statistical information, about dependencies taking place in HPPD, things that have helped or that did harm etc.

Also HPPD protocol, could be a great way for some people to stay motivated to keep their routine in order to try to improve their symptoms.

 

There are much more steps we have already planned to take, but I don't want to overload you with information.

 

We are looking for people interested in long term cooperation, while every kind of contribution is highly appreciated. If you want to work with us just by giving your thoughts on stuff, thats great, if you have some more time to spend on the project, thats even better!

Everybody can simply do what they like or do best. We need people with all kinds of skills.

 

If you like to join us please PM me or contact me at hppd90@wp.pl . I will be able to present you the whole picture then, so we can discuss it more.

 

It is something we have been thinking about for a while and finally we got a courage to start it. Personally, it feels great. I am really happy, which is a rare thing lately.. Just to let you know - we are not giving up on this project until we figure out how fight HPPD effectively, I can promise you that.

 

Pablo.

 

[OldSchoolAr]

awesome that sounds so great!

e mailing you now

[Jay1]

If you need any help with design... maybe make some visual statistics website... count me in (I only design though, need a coder)

[Guest]

Fundng, by and large, is problematic for any organization but our mission is one based on pure selflesness and in altruism; to restore lost lives and allow us the promise to live to our upmost potential. With that said, forming a non profit is critical as a fund generating source regardless how your talents can be best expressed and utilized. However, the bureaucratice red tape can be most challenging. In my own quest to do my part to put an end to HPPD I stumbled upon the concept of Financial Sponsorship. Some of you may already be familiar with the concept but for those of you who are not Financial Sponsorship is a term that is used within the domain of the non profit space to lend license to budding organization to operate as a non profit until they attain their own status with the IRS. Most non profit financial sponsors take a small percentage of funds raised but it's worth it and a means which allow those of you who are indeed serious about making a difference. I suggest googling the term but you can just as easily start here: http://www.fiscalsponsordirectory.org/ and see for yourself the resources and types of non profits these organizations can and will sponsor.  For those of you who wish to assist me to raise funding for scientific research through my organization; The Neurosensory & Neurocognitive Restoration Foundation, please send me a PM to get things underway. I ask specifically for Jay and Visual to contact me but if you feel as though your talents can help then please do not hesitate to contact me. I won't let severe HPPD in this life get the better of me not at least without having exhausted all available options.

[onelovez]

I got in contact with Hope about the organization. It's something to consider.

Ok, to summer up - I have got few responses, there are few people interested in working on the project. We are looking for few more.

Last few days I have spent on improving the survey forms, collecting opinions, organizing workspace for research. After some suggestions I gonna try to do these forms in Google Form - this will take me a while, as I need to create a template for the survey results, but after thats done - it should be much easier for people to fill out these forms. Then it will need some testing and we can start handing them out to people.

 

The next step that I consider important is starting a research of treatments - as that is the ultimate goal of this project. If you like researching information, let us know.

[brake]

I'm in!

[Guest]

The response I have recieved from Fiscal Sponsors is overwhelming. 
They are interested in helping. 
Need to know if there is anyone who has hosting space for a website.

[Guest]

I started a closed group on facebook called the Neurosensory & Neurocognitive Restoration Foundation. If you feel like you can contribute to the success of the non profit project, please join so we can exchange ideas, roll up our sleeves and get work done. I'm working under the alias Dr.FutureMed

[Guest]

Ok so here goes.
One of the sponsors is asking for the following information in order to get the process going:
1. A detailed description of our work and mission.
2.Program plan and timeline that shows capacity for viable funding options (not including soliciting or donations), expectations and goals for fundraising in the next year and any commitments for fundraising. Need to supply any examples or history of previous fundraising activity.
3.Details about our management team, staff and volunteers.
4. Project budget.

If we can iron out these basics then we can work under the auspices of a non profit which is badly needed in my opinion to raise money for research. Let's do it people.