Every January, many people look forward to the new year with hopes and dreams, goals and objectives. The Facial Pain Association (FPA) is no different. We have spent the last several months thinking and planning for the best ways to fulfill our mission, to serve everyone living with facial pain.
That is a tall order. We are all on different paths, in different places in our journeys. Some have just been diagnosed. Others have been living with pain for many years. Many people care for someone who has facial pain and still others are managing their pain or are pain free. The needs for each of these groups are unique, and the FPA is committed to addressing all of them.
Our focus this year is ensuring we meet you where you are, providing support how and when you need it most. So, within the different paths and all of the experiences lived by those with facial pain, the Facial Pain Association has educational opportunities, options for support, and ways to advocate for one another. You’ll see this theme throughout the year. The cover of this magazine shows a maze with the sun shining down on all of the different paths. The FPA is that light, reaching you where you are. We’re planning another virtual conference for late April 2024, and our new conference logo shows a maze inside the circle representing the faces of those living with facial pain – it shows that we are with you on your journey with facial pain, no matter where you are on your path.
We have several initiatives that will help us accomplish our goals.
Accessibility
We are working on our website to make it more accessible, adding a better mobile experience, multilingual materials, and new navigation to make resources easier to find and access.
Dentists & Neurologists
An initiative to educate dentists that was launched in 2022 will continue and expand to educating neurologists as well. While our primary goal with the dentist initiative is to educate dental professionals in an effort to avoid unnecessary dental procedures for people with neuropathic facial pain, our neurologist initiative will have a different focus. To be clear, we understand that many neurologists already know a great deal about trigeminal neuralgia, but it is still a relatively rare condition. Some specialists may only see a few cases of facial pain in their careers. Our goal is to expand the knowledge of neurologists, so they know the breadth of treatment options available to people who live with facial pain every day.
Patient Registry
Earlier this year, the FPA joined the National Organization for Rare Diseases (NORD) and we are closer than ever to launching our patient registry. NORD’s IAMRARE platform supports the registries of many nonprofits and offers the benefit of a proven partner to help us build this incredible resource. With your contributions to the registry, we will build a collection of data that will benefit researchers and inform our efforts to affect change in the facial pain community.
Inclusiveness
A generous donor asked about the FPA’s efforts to be inclusive – to reach communities that are typically underserved. While we have made efforts to increase our representation, to add accessibility to our resources, to make our educational opportunities available to everyone, regardless of their location, we need to go further. We need to reach those in rural areas, who not only don’t have a facial pain specialist available to them but may not have a primary care physician; they may not have access to the internet. We want to make our resources consumable for everyone, regardless of education level or exposure to medical terminology. We know that people in pain need accessibility and ease in their search for resources. We need to meet them where they are.
I hope you’ll join our growing corps of dedicated volunteers, our amazing staff, and our medical and research partners as we band together to achieve these goals. Whether it is through our efforts to educate, support, or advocate for those living with facial pain, we are here for you, no matter where you are in the maze of your facial pain journey.
