hope1 436 Report post Posted July 31, 2015 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 7 Share this post Link to post Share on other sites
Jay1 133 Report post Posted July 31, 2015 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. 1 Share this post Link to post Share on other sites
OldSchoolAr 56 Report post Posted August 4, 2015 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. 1 Share this post Link to post Share on other sites
OldSchoolAr 56 Report post Posted August 4, 2015 I think the site www.neurogroup.org is truly great and an awesome resource... Share this post Link to post Share on other sites
hope1 436 Report post Posted September 12, 2015 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 Share this post Link to post Share on other sites
hope1 436 Report post Posted December 27, 2016 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. Share this post Link to post Share on other sites
ddiddy66 8 Report post Posted December 31, 2016 That's great Share this post Link to post Share on other sites
SleepyMistake 0 Report post Posted January 20, 2017 any update on this? i'll help, if you need some Share this post Link to post Share on other sites
hope1 436 Report post Posted March 26, 2017 I can always use a hand. info@neurogroup.org 1 Share this post Link to post Share on other sites
hope1 436 Report post Posted May 25, 2017 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. 1 Share this post Link to post Share on other sites
hope1 436 Report post Posted June 6, 2017 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. Share this post Link to post Share on other sites
hope1 436 Report post Posted December 21, 2017 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 3 Share this post Link to post Share on other sites
Spartan 42 Report post Posted April 4 The NSRF is moving swiftly towards world domination !! 1 Share this post Link to post Share on other sites
hope1 436 Report post Posted June 10 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. Share this post Link to post Share on other sites
olivier24445 2 Report post Posted June 11 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 Share this post Link to post Share on other sites
hope1 436 Report post Posted August 5 Doing what I can to help this community Share this post Link to post Share on other sites
hope1 436 Report post Posted August 9 Don’t know how to improve SEO. If anyone can help please let me know. Share this post Link to post Share on other sites
hope1 436 Report post Posted October 7 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. Share this post Link to post Share on other sites
Jay1 133 Report post Posted October 8 Well done hope1, great work... I look forward to hearing more 1 Share this post Link to post Share on other sites
