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

Interesting study.

Abnormal brain iron deposition in patients with new daily persistent headache: a prospective quantitative susceptibility mapping study - The Journal of Headache and Pain Background The underlying pathogenesis of New daily persistent headache (NDPH) is currently unknown. Abnormal iron deposition in specific brain regions has been reported to be associated with the pathogenesis of migraine. This study aimed to investigate the role of iron metabolism disorders in the p...

Recent study on CGRP

Calcitonin gene-related peptide monoclonal antibody treatment for new daily persistent headache - The Journal of Headache and Pain Background New daily persistent headache (NDPH) is a rare headache disorder that often resembles chronic migraine (CM) phenotypically, but unlike CM is daily from onset. Several calcitonin gene-related peptide monoclonal antibodies (CGRP mAbs) have been proven to be effective in CM. It is not known....

Interesting case study out of Japan
Featuring Vyepti

Complete Resolution of New Daily Persistent Headache With Migraine-Like Features Following Erenumab Treatment: A Case Report - PubMed New daily persistent headache (NDPH) is a rare and difficult-to-treat primary headache disorder characterized by a sudden onset of continuous, unremitting pain. We report the case of a 46-year-old Japanese woman with a history of episodic migraine who developed a persistent daily headache with migra...

June is Migraine & Headache Awareness Month! Headache is not just head pain.
Headache disease is a spectrum disease with a range of symptoms. It can take time to
find a treatment that works for you, but there is a path to better days!

Chronic pain in childhood is too often invisible. The U.S. Pain Foundation wants to hear directly from children & teens (ages 8–17) living with pain to better understand their challenges. Add your voice: https://survey.alchemer.com/s3/8229702/a7eb729a5c5d

U.S. Pain Foundation is leading a national initiative to uncover critical insights into chronic pain. Whether you live with pain, care for someone who does, or treat it—you can help shape better care. Take the Pain Experience 2025 Survey today: https://survey.alchemer.com/s3/8284776/bf8ec63c9e96

Tolerability of repetitive dihydroergotamine infusions paired with an adjustment in preventive treatment strategy in chronic headache disorders in children and youth

Tolerability of repetitive dihydroergotamine infusions paired with an adjustment in preventive treatment strategy in chronic headache disorders in children and youth - The Journal of Headache and Pain Background In adults, intravenous (IV) dihydroergotamine (DHE) has been shown to be effective at improving medium term outcomes in patients with chronic headache disorders. The IV formulation is utilized given its superior bioavailability. We aim to assess the safety and effectiveness of repetitive....

In support for my friends with Cluster Headache

Honoring Cluster Headache Awareness Day: You Are Not Alone 💙

Today, on Cluster Headache Awareness Day, we stand with those enduring one of the most debilitating and often misunderstood pain conditions. Cluster headaches bring unimaginable pain and disrupt lives. As a community, let’s amplify the voices of those living with cluster, shed light on their struggles, and advocate for access to treatments.

Don’t miss this powerful firsthand account of living with cluster headache: https://uspainfoundation.org/blog/the-barking-cat-being-a-father-with-cluster-headaches/

Let’s work to spread awareness, advocate for better treatments, and offer our support to all who need it.

The NDPH interview is on day 5

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.