Following is the body of a letter I wrote to The Roskamp Institute on 7/21/22:

I am pleased to be a patient of Dr. Andrew Keegan for New Daily Persistent Headache. He has listened sympathetically to my pleas and agreed to propose to you that Roskamp Institute go to NDPHresearch.org and apply for a grant. I am writing to follow up on his proposal.

NDPH is a rare, treatment refractory headache which strikes the unfortunate, who have no history of headache, so suddenly they can remember the exact date on which it struck and what they were doing at that moment. There are no specific medications or treatments that are effective in relieving the unremitting, unending, unrelenting pain that sufferers must endure for years, decades or lifetimes. Doctors ‘try’ drug after drug, treatment after treatment, all of which are designed for other ailments in the hope they will be effective for NDPH. Unfortunately, this scattershot approach of trial and error usually results in error. Patients with NDPH need relief from this devastating, debilitating, constant, twenty-four/seven pain.

I fully realize that the decision to research an illness is not one to be made quickly or lightly. There are numerous factors to consider. Researching NDPH would not be a profitable undertaking as there is a limited patient base. Yet those patients, including children and teenagers, are desperate for a cure. The chronic pain of NDPH adversely affects studies, jobs, relationships, social life, hobbies, sports, joy and everything that makes life worth living. Adverse reactions to ‘cures’ make things worse. We need effective medication.

It is my fervent hope that you will consider researching New Daily Persistent Headache, and I hope that you will decide positively. As a lay person with no medical knowledge, but with personal experience with NDPH, I would be willing to do whatever I can to help. Members of my on-line support group have already said they would be willing participants in a clinical trial. Dr. Keegan tells me that research could take ten years. Ten years is better than never.