Real impact. right now.

Real impact. right now.

When listening to the rare disease community, one message has come through loud and clear: you need access to resources and tools that help you now — not years from now, not after the next trial concludes, not if the results happen to apply to you.

Research matters. But no one should have to suffer while waiting for it.

That's why I AM HEARD Coalition exists — to bridge the gap between where medicine is and where you are today. Because the most important trial isn't the one happening in a lab somewhere. It's the one you're living every single day.

“JUST BECAUSE SOMEONE MAY NOT BE AN “ELITE ATHLETE”, DOESN’T MEAN THEY SHOULDN'T HAVE ELITE CARE, COMMUNITY, & ADVOCACY” - JAMES, SYRINGOMYELIA DIAGNOSED & CO FOUNDER OF The I AM HEARD COALITION

stAY TUNED FOR NEXT GRANT APPLICATION WINDOW

Our dynamic medical advisory board, along with its founders, have been strategically developing relationships with other organizations that have resources to benefit the community we serve. By using science driven data, as well as firsthand experiences, we are proud to be able to introduce a grant program that equips individuals suffering with syringomyelia, with tools & resources to help them get the most out of life. No more waiting for relief. Patients deserve the chance at the best quality of life NOW.

Basic Overview of the Program (More in depth information upon announcement of application phase):

  • Private PT care, dietitian guidance, grocery stipends, dietary supplement regimens, massage guns, tens units, adaptive exercise equipment, and more, all part of a grant package that promotes health optimization under not so optimal circumstances.

  • Provider too far? We’ll cover the travel cost. Co-pay creating too much stress? We’ll handle that for you. Imaging? You bet! We’ll take care of whatever is the priority in the moment and game plan together from there.

  • You won’t just be awarded a grant and told “good luck”. We want to stay in touch, hear how you’re doing, and understand what modalities are most helping you so that we can better understand the most effective methods possible for other patients. This isn’t transactional, you’ll be part of our family.

  • At each new grant application window, even if awarded previously, we welcome you to reapply. The same evaluation process will take place, and we will award you based on that same fair process everyone goes through. Be sure to check the website for grant window updates or follow us on our social media pages for up to date information on all things at the coalition.

Collage of images including a pain relief device, a selection of healthy foods, a chiropractor assisting a patient, a person taking notes, MRI scans, and a person in a wheelchair performing physical therapy with a resistance band.