help Show those diagnosed with syringomyelia & associated conditions that they are finally being heard
Why Give?
Research matters, but no one should have to suffer while waiting for it. Your gift puts help in patients' hands right now, and keeps our education free for anyone who needs it.
Led by People Who Live It
Our co-founder and president, James, and four of our board members live with syringomyelia. We're advised by a medical board spanning neurosurgery, neurology, physical therapy, nutrition, chiropractic, and mental health. Our medical board advises us. The community decides.
Support, Shipped to the Door
Every care package is tailored to the person opening it, whether they live with syringomyelia, Chiari, EDS, POTS, or all of the above. $50 covers standard care package materials. Your gift helps us make each one even better and keep funds on hand, so no one waits on a box.
Treatment Within Reach
Through our Regenerative Therapy Access Program, selected community members receive treatment at a vetted partner clinic at no cost to them, including flights and lodging. We track every person's outcomes, so each award helps one person now and builds the evidence that could open access to many more.
For Everything Else in Between
Not every need fits in a box. Our patient grant program is built to cover things like private physical therapy, dietitian guidance, travel to providers, co-pays, and imaging. And we don't hand over a grant and say "good luck." We stay in touch.
Every Dollar, Out in the Open
We share a transparent financial check-in every month, so you never have to guess where your gift went. Our goal every year is to keep overhead and admin at 10% or less. We've even published what we found after reviewing 69,771 nonprofits, in The Truth About Nonprofits.
Help Someone Feel Heard
We started in Nashville, and we're building every program to reach patients wherever they live. Give once or monthly, and help one more person living with an often-dismissed diagnosis finally say, "I AM HEARD."
Frequently Asked Donation Questions
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YES. As a 501(c)(3) organization, any donations can be used as a tax write off. Proper documentation for such purpose will be sent shortly after donation has been made.
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Your donation funds our direct support programs: care packages, regenerative therapy access, and patient grants for everything else in between. It also supports the free education and awareness work that helps people living with syringomyelia and associated conditions get taken seriously.
We share a transparent financial check-in every month so you can see exactly how funds are used, and our goal each year is to keep overhead and admin at 10% or less.
Research matters, and our Regenerative Therapy Access Program tracks outcomes so every award helps build the evidence. But our main focus is helping people feel the difference in their daily lives now, not just hope for the future.