Why the Facial Pain Advocacy Alliance Matters…To You!

For many years, there wasn’t very much accessible, authoritative information about facial pain conditions on the internet. Up until a year ago, there was only one nonprofit dedicated to information about facial pain, and it concerns itself with trigeminal neuralgia almost to the exclusion of all other facial pains. If you suffered from glossopharyngeal neuralgia, SUNCT, trigeminal deafferentation pain, or any of the other, lesser known facial pain conditions, you were out of luck. To me, that situation was a problem. I was taught that when you identify a problem, you shouldn’t complain without also offering a solution. The Facial Pain Advocacy Alliance (FPAA) is that solution. The mission of FPAA is to bring facial pain conditions out of obscurity and into the light. All of them.


awarenessSince TN Awareness Day on the 7th, FPAA has been introducing awareness days for the other major facial pain conditions. We observed Geniculate Neuralgia Awareness Day on October 10th, Glossopharyngeal Neuralgia Awareness Day on October 14th, and Anesthesia Dolorosa Awareness Day, today, October 17th. By the end of the month we will also have covered:

  • Cluster Headache Awareness Day (10/21,)
  • Paroxysmal Hemicrania Awareness Day (10/24,) and
  • SUNCT/SUNA Awareness Day (10/28.)

That may seem excessive to some. In case it seems that way to you, I would like to share a few comments that I read on Facebook after publishing recent Face Facts blog posts.

On posts about Geniculate Neuralgia Awareness Day:

I have never heard of this. I’m going to research now.

Going to a new neurologist. Going to ask to be tested for this!

On a post about Glossopharyngeal Neuralgia Awareness Day:

After all the research I had done about TN and I had never heard of this. So glad I have now. I think I have this too!

Read the above quotes again and let them sink in. Maybe you are also one of the many facial pain patients who found the key to eventual diagnosis in a Facebook support group. If you did, you already know the impact that discovery had on your life. If you didn’t discover your condition through a Facebook group, let me assure you as someone who did, the results are immeasurably positive. In my case and many others, the results were actually life saving.

Get your own warrior card.

My greatest hope for FPAA has always been to provide readily accessible information that could change the course of someone’s facial pain journey for the better. That is definitely happening, and it’s not just with the announcement of new Awareness Days either. I already have seen positive results with our Warrior Cards Project, as well. There are people who don’t have facial pain reading people’s Warrior cards and commenting that they had never heard of the condition, or that they weren’t aware of how much pain that Warrior has to endure. There are facial pain patients bonding over reading each other’s cards and discovering shared geography and diagnoses. These are just the comments that I have seen. There are many comments on hundreds of post shares that I haven’t seen, and I have no doubt that those shares are impacting lives too. We are on a mission to raise awareness for the betterment of our community. Not down the road, and not eventually. Right now.


How You Can Help

As facial pain patients, we all have a desire to help ourselves and others. Naturally, we seek to support organizations and activities that will benefit the entire facial pain community. We help ourselves when we contribute to research endeavors, because research is our best hope for a cure. We also help ourselves by contributing to awareness-raising endeavors. While raising awareness isn’t likely to change your situation for the better, it can and does realize immediate and measurable results in the lives of others. A cure would be a glorious thing, but even if a cure were found, it would still never be available for people who aren’t properly diagnosed, and awareness is the key to diagnosis.

Our goal is to always offer all of our services to the facial pain community at no charge.

  • The graphics that are offered here will always be free.
  • We have no plans to ever ask you to pay to be a “Member” of FPAA.
  • We do not accept any advertising from doctors or medical centers* (and if the time ever comes that we do, that advertising will be clearly marked as such.)

transparencyWe’d love to never ask you for money at all, but the reality is: what we are doing here costs money. Well-funded nonprofits spend upwards of $30,000 annually on internet advertising. Our internet advertising budget is tight, coming in at under $100/month. Nonprofits with similar websites spend thousands of dollars annually to have their websites designed and maintained by web development professionals. Our website was designed and is maintained in-house and was/is paid for by yours truly. The FPAA machine runs quite well on a very small budget, but what if that changed? How many more people could we reach if our Google advertising budget increased? How many more people would learn that there are many facial pains besides TN if we could reach them? Well…we can reach them. And the operative word in that sentence is “we.” Can you commit to donating monthly to FPAA? Anything you can give will help, but let’s face it, more is better.

By donating to the Facial Pain Advocacy Alliance,
you are investing in our shared mission to bring all forms of facial pain
out of obscurity and into the light.

Please choose a donation amount below, or give a custom amount (there is a $1 minimum.) To make this a one time donation, please uncheck the box that says “Make this Donation Monthly.”

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Donation Total: $10.00

*Any Google Ads that you see one this site are generated by Google Ads, and not by us. Allowing Google to runs these ads on our site for the last 6 months has earned us less than $40.

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