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11 May 2021

SUNCT/SUNA & Trigeminal Neuralgia Town Hall

 


We’re sharing with you an opportunity to learn more about some less common headache types. The Coalition for Headache and Migraine Patients (CHAMP) is collaborating with Praxis Precision Medicines, a clinical-stage biopharmaceutical company, to host a series of virtual Town Halls on SUNCT/SUNA and Trigeminal Neuralgia.

Short-lasting unilateral neuralgiform headache attacks (SUNCT)At least once a day, attacks of mild to serious, purely unilateral head pain lasting seconds to minutes and are typically accompanied by pronounced lacrimation and redness of the ipsilateral eye.

Short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms (SUNA) - Attacks fulfilling the criteria for SUNCT with only one or neither conjunctival injection and lacrimation (tearing).

During the town hall, Praxis will share its research in the rare headache and pain space. It is currently in the early stages of developing medicine for SUNCT/SUNA and Trigeminal Neuralgia. 

Due to the relatively small number of SUNCT/SUNA and TN patients, these Town Halls are unique events to learn directly from individuals with these conditions.

Virtual Town Hall: May 25 at 6pm ET


Register: https://tinyurl.com/yvv479je


21 April 2021

Join The Diva Squad for Miles for Migraine - Hartford 2021


Hi Guys!

I just wanted to take a moment to tell you about an organization that’s very special to me.

Miles for Migraine is a nonprofit whose mission is to improve the lives of people with migraine and their families.

They raise awareness about headache disorders and raise funds to help find a cure for migraine.

I’m going to be supporting them by participating in an upcoming Walk, Run, Relax event where I’ll be committing to some form of intentional movement, whether it is walking, stretching, hiking, or gentle yoga.

This year, as in past years, I am raising awareness for migraine because I and millions of other Americans live with migraine disease and Miles for Migraine is the one singular organization that allows migraine patients to show up in any way they can to support migraine research, fellowships, and awareness.

Anyone want to join my team and help advocate for those who experience migraine? We are The Diva Squad and we are participating in the event, Miles for Migraine - Hartford 2021.

I hope to "see" you there! The virtual event runs from April 28 through May 6. Remember that any intentional movement or relaxation activity counts!

Be sure to dress up in your best purple flair and post to social media for another chance at a fun prize!

As always, thanks for your support. 💜



20 April 2021

#Sponsored: Mothers: A Conversation About Migraine - Part 2

Mothers: A Conversation About Migraine – Part 2



This is a continuation of my first blog post about my migraine interview with Khloè 

The Migraine Thief 

What Khloè described to me that day about losing time in her life is very true. We should not be taken away from our lives because of something we didn’t ask to have. I call my migraine a thief because, like Khloè said, it steals time away from our families, friends, and our goals. Between the time it steals from our businesses to the things we're trying to achieve on a daily basis, it's hard to show up in the way that we want to every day. Migraine can be so unpredictable – I feel like when you live with migraine, it's almost like it's lurking around the corner waiting to jump in and ruin your day. 

13 April 2021

#Sponsored: Mothers: A Conversation About Migraine

 


We all know Khloè Kardashian to be a mogul, TV personality, and businesswoman. For the past thirteen years, her life and family have been on our television screens with Keeping Up With the Kardashians. But, what most may not know about Khloè is that she has lived with migraine since she was in the sixth grade. Migraine, as we all know, does not discriminate among those who are afflicted with this debilitating neurological disease. 

It doesn’t matter what your race, ethnicity, or socioeconomic status is when it comes to migraine. It can and does affect people from all walks of life. As someone who is an outspoken advocate in the migraine and headache community, I thought it was important for me to have a conversation with Khloè, mother to mother. Personally, I felt as though she hasn’t been seen as a person living with migraine. Rather, her disease is diminished because of her fame. 

06 April 2021

Urge NIH to Focus Research on Headache Disorders

 


We are sharing a request from AHDA to invite your networks to help with the asks from Headache on the Hill this week. This request and opportunity are ONLY for people who did NOT attend HOHNow that the Congressional Offices have heard our asks, we need them to hear from more constituents so they understand the importance of these requests. And, we need to act quickly. Offices must hear from folks by April 9th. Luckily, AHDA has made it super easy!

We invite you to reach out to your Members of Congress, before April 9th and advocate for their support of much-needed funding for research from the NIH HEAL Initiative specific to migraine and headache disorders and support for our veterans. You will get a link reminder at the completion of your initial requests.

Urge NIH to Focus Research on Headache Disorders

Expand Access to VA Headache Disorders Centers of Excellence (HCoE)

Click on the link to fill out your name and mailing address (this directs the email to the right Members). There is a pre-written communication you can send to offices. If you want, you can add 2 brief personal sentences to the email. 

Also, be sure to share posts from the @AHDAOrg Facebook and Twitter pages over the next few days.  

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