NDPHaware.org

Dear NDPH community
I'd like to wish everyone a happy, healthy and pain reduced holiday season.
After much deliberation over the past few months, it's with some sadness that I'm shutting down the NDPHaware 501c nonprofit. This was not an easy decision but I have my reasons, both personal and professional.
I appreciate and am grateful for all your support over the past few years.
I'm really proud that we were at least able to achieve our first goal of a patient experience survey. The final analysis is still underway and will post when completed. One thing i learned, research is a slow process. I am attaching the initial survey impressions from last year for your reference. Hopefully i was able to bring a bit more awareness and attention to NDPH.
Advocating for yourself is the first step and if you have a bit more to give, advocate for the community.
The website has been transferred to Sarah Anunson from the NDPH Support for Patients FB group. Please support Sarah and her efforts to help the community.
This FB will stay up and I'll try and continue to share information relating to NDPH.

Take care
Alan

https://drive.google.com/file/d/1NaMX6Ru6zqtJhuIv9zdUNVWSPqJsWTGl/view?usp=drivesdk

Spent today on Capitol Hill for Headache on the Hill advocacy day.
Met with staffers from Senator Alsobrooks and in the Congressional offices of Harris, I've and Elfreth from the state of Maryland.
See below for more details and how you can help.

It's Headache on the Hill 2025! Right now, over 250 dedicated advocates from across the country are on Capitol Hill to advocate for crucial legislative support for our disease state. They're standing up for the Safe Step Act, safeguarding NIH funding from budget cuts and increased funding for the VA Headache Disorders Centers of Excellence – all critical components of our legislative agenda.

But they can't do it alone. They need your voice to amplify and support their message.

Here's how you can make a difference from wherever you are:
-Visit this link to access a pre-written letter template: https://forms.allianceforheadacheadvocacy.org/a/take-action-support-headache-hill-2025-legislative-agenda
-Take just two minutes to personalize and send the message to your representatives.