HPPD Non Profit Status Update

[hope1 436]

I have been putting the time and effort in the development of the website, changing the layout a bit, adding content. Could really use some feedback and advice. I'm not scientifically inclined about this condition but reading up as much as I can and trying to articulate it in a manner that would educate the layperson as well as generate interest from the scientific community. The goal right now is to optimize the website and then send a pitch letter of invitation to put that board together. I really could use a hand. www.neurogroup.org

[Jay1 133]

good work, i have pinned this post.

 

Come on people, those of you that are good at the science side of HPPD, please PM hope1 and help him out.

[OldSchoolAr 56]

That looks awesome Hope 1 .. Truly Great Efforts..

 

I really do appreciete the time and effort this has taken you.

 

To be honest tho, Unfortunatley Science and web sites are not my strong point.

[OldSchoolAr 56]

I think the site  www.neurogroup.org  is truly great and an awesome resource...

[hope1 436]

The Neurosensory & Neuroregenerative Research Foundation has composed an advocacy and outreach letter to members of key Congressional Committees with the request in the allocation of funding for HPPD. Understand that any action that leads to research begins with the patient, their family and friends. Please be proactive and get as many letters sent as humanly possible. A cure can one day be found and you are the key.
Click the link below:

http://www.neurogroup.org/HPPD_ADVOCACY_%26_OUTREACH.html

[hope1 436]

After nearly a year, I've finally managed to get pro bono work provided by an attorney who will file the necessary forms to help us acquire 501c3 status. This is truly remarkable news thanks to a team of dedicated HPPDers who are taking control over their condition in the pursuit of finding a cure.

[ddiddy66 8]

That's great

[SleepyMistake 0]

any update on this? i'll help, if you need some 

[hope1 436]

I can always use a hand.

info@neurogroup.org

[hope1 436]

New website is up. Needs some minor edits that are being worked on.
The donation button won't be up until we acquire non profit status. 
Don't know what to make of the future but we are working hard at having one with HPPD being resolved.

[hope1 436]

In becoming a non profit able to solicit donations, most states require forms be filed and resident agent able to accept mail on behalf of the foundation.
I'll be putting up a seperate post looking for volunteers interested in being resident agents as this service ordinarilly costs money which we currently have none.

[hope1 436]

The non profit is up and running. 
Starting a seperate post with clinical tirals and donate information.
Took me long enough but I'm a persistent bastard.

www.neurogroup.org

[Spartan 42]

The NSRF is moving swiftly towards world domination !!

[hope1 436]

The final revision of the HPPD study is under IRB review. We expect it to be approved within a three month window. When released, I’m asking all of you to please share it on social media, among friends, family and to donate.

[olivier24445 2]

18 hours ago, hope1 said:

The final revision of the HPPD study is under IRB review. We expect it to be approved within a three month window. When released, I’m asking all of you to please share it on social media, among friends, family and to donate.

The website looks great !  it really has all the informations one person should know. it deserve a better ranking on Google . I could not find it easily at first.

Thanks again for the great work

[hope1 436]

Doing what I can to help this community 

[hope1 436]

Don’t know how to improve SEO. If anyone can help please let me know.

[hope1 436]

The non priofit created and our first study for hppd is under ethics board review. 20 volunteers will be needed with a diagnosed confirmed case of hppd. Stay tuned.

[Jay1 133]

Well done hope1, great work... I look forward to hearing more

[hope1 436]