I AM HEARD Coalition

I AM HEARD Coalition is a nonprofit advocacy organization based in Nashville, Tennessee, serving people affected by syringomyelia and commonly associated conditions. Its mission is to bridge the gap between diagnosis and a cure through direct patient resources, research, and education. The coalition works to raise awareness, build community, and help people access better care and improve their quality of life.

Its resources include information about current treatments, procedures and surgeries, prescription medications, associated conditions, and preparing for medical appointments. The organization also offers care packages, a grant program, a provider directory, youth patient handbooks, a medical glossary, and resources for veterans. Through testimonies, educational materials, and community-building opportunities, it aims to make patients’ experiences and concerns heard.

The coalition emphasizes mindfulness, openness, integrity, and passion, recognizing that each person’s symptoms and experience are different. It also values transparency about its work and acknowledges that understanding of syringomyelia continues to develop. People can support its efforts by donating, creating a chapter, or engaging with its research and advocacy initiatives.