Here you’ll find previous, ongoing & newly completed research. It’s important we review old publications to understand how to better approach future studies to allow for maximum effectiveness. Any study the I AM HEARD Coalition has had direct involvement with will be annotated in title as “Coalition Sponsored”.

Medical literature can often times be confusing, leaving many individuals more conflicted than before they came to the article. In this section, the literature will be summarized in a manner that is direct and to the point. If you want access to the full publication, there will be a direct link attached to the summary.

Currently, there’s only really one surgical approach for Syringomyelia. This isn’t ideal. Spine surgery itself isn’t something we want to experience if possible, therefore, our studies are and will continue to be focused around less invasive procedures/modalities (Cell therapy being of high interest) that enable a patient to get back to the quality of life they deserve quickly, rather than experiencing a lengthy rehab process & in many cases, ending up worse than pre operation.

At the end of the day, no one understands the challenges of living with a rare disease better than the patients themselves. That is why our coalition will only conduct research that has been approved through a community voting window. We gather proposals, and our community decides which ones we pursue.