It is time to take a stand for a community too long unheard.
The I AM HEARD Coalition advocates for people affected by syringomyelia and it’s commonly associated conditions through direct patient resources, education, awareness, community building, and practical action that helps people access better care and a stronger quality of life.
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To empower individuals directly with resources that enable a better quality of life while navigating syringomyelia & its associated conditions.
our values
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We strive to be cognizant that not all cases are the same. Each individual impacted by syringomyelia has their own story, symptoms, and unique personal feelings towards the diagnosis. We will hear each and every individual, treating their concerns with just as much urgency as the previous and next.
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We will never claim to have all the answers. One of the problems with the syringomyelia diagnosis is lack of research, as is the same with many other rare diseases. So with that in mind, there’s a lot to be wrong about. But there’s also much more to learn and grow upon. We welcome all insights and challenges - and know that being wrong is just the first step before getting it right.
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Transparency through direct access to what is going on day to day at the coalition will be readily accessible to the public. We want to show the community the real impact it’s having - showing not just our wins, but losses as we grow as an organization. This is not your ordinary advocacy organization. We will never participate in any actions that the community isn’t informed about.
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Our founders and members continue to be directly adversely affected by the syringomyelia diagnosis. This brings a fire and passion to seek out better answers and resources to finally bring comfort to those diagnosed with syringomeylia. The same passion that goes into our own healing journey goes into those also battling the same condition.