Frequently Asked Questions

We deeply value the broader medical and nonprofit community. We also believe people living with syringomyelia deserve a different approach. Here's what that looks like:

We help people now, not someday. High-quality research is vital and takes time, but no one should have to suffer while waiting for it. Our focus is putting help directly in patients' hands through three direct-support programs: care packages tailored to each person, regenerative therapy access at no cost to the recipient, and patient grants for everything else in between.

Our support builds the research. Our Regenerative Therapy Access Program does two jobs at once. Each award helps one person now, and every recipient's outcomes are tracked with the same measures. Over time, those results build real-world evidence that can support proper research, regulatory review, and eventually insurance coverage.

You can see where every dollar goes. We share a transparent financial check-in every month, and our goal each year is to keep overhead and admin at 10% or less. No "fluff" spending, and no asking you to just take our word for it. We even reviewed 69,771 nonprofits and $22.2 billion in patient organization grants, and published what we found in The Truth About Nonprofits.

We're led by the people we serve. Many of our leaders live with syringomyelia themselves. Our medical board advises us. The community decides.

We hold the system accountable, and we celebrate who gets it right. We speak up when we see patterns of mistreatment, misdiagnosis, or dismissal of patient concerns. We also lift up the providers who listen, learn, and meet a high standard of care, and our vetted provider directory helps patients find them.

We look at the whole person. Syringomyelia often comes with associated conditions like Chiari malformation, EDS, and POTS that can affect every part of daily life. New or worsening symptoms deserve to be taken seriously by clinicians who understand how spinal cord changes affect the whole body.

Education is always free. We will never charge patients to learn about their own condition.

To learn more, visit our Care Packages, Regenerative Therapy Access, and Grant Program pages.

Your gift goes to work for people living with syringomyelia and associated conditions like Chiari malformation, EDS, and POTS. Here's where it goes:

Care packages. Every package is tailored to the person receiving it. $50 covers standard care package materials. Anything beyond that helps us make each package even better and keep funds on hand, so we can send one the moment someone needs it.

Regenerative therapy access. Selected community members receive treatment at a vetted partner clinic at no cost to them, plus flights, ground transportation, and lodging during treatment. Each recipient's outcomes are tracked, so every award also helps build the evidence for broader access.*

Patient grants, for everything else in between. Grants cover the needs that don't fit in a box, like private physical therapy, dietitian guidance, grocery stipends, travel to providers, co-pays, and imaging.

Free education and awareness. Patient handbooks, printed guides, and the education we share online and in our community, always free for patients.

Program growth and community events. Building every program so it can reach patients wherever they live, and bringing our community together in person.

Essential operations, kept small. A small share covers necessities like software, payment processing, and outreach. Our goal each year is to keep overhead and admin at 10% or less.

You'll see all of it. We share a transparent financial check-in every month showing how funds are used. If we ever add paid staff or new operating costs, you'll see those in the updates too. Donors and patients deserve to see how resources are actually used.

We want people to feel the difference in their daily lives now, not just hope for the future.

Will you offer treatments?

We don't provide medical care ourselves, but we help you find it, understand it, and afford it. The I AM HEARD Coalition does not diagnose conditions or give individual medical advice. Here's what we do instead:

Education you can bring to your appointments. Guided by a medical advisory board spanning neurosurgery, neurology, physical therapy, nutrition, chiropractic, and mental health, we share free education on this website and our social channels. That includes symptom management, questions to ask your clinicians, and topics worth exploring with your care team.

A vetted provider directory. We highlight providers, clinics, and resources that align with our values and our community's feedback. These are shared for educational purposes only. They are not guarantees of outcomes or a substitute for individualized medical advice, so please evaluate any provider together with your own healthcare team.

Regenerative therapy access. Through our Regenerative Therapy Access Program, selected community members can receive treatment at a vetted partner clinic at no cost to them. The clinic provides the treatment, does its own medical evaluation, and makes every eligibility and treatment decision. We never override or influence that judgment. Applications are not open yet, so join our newsletter to hear first when they are.*

Patient grants. When a grant window is open and an application is approved, our grants can help cover access to care, like private physical therapy, dietitian guidance, travel to providers, co-pays, and imaging.

Every person's situation is different. Treatment decisions should always be made with qualified, licensed healthcare professionals who know your medical history.

We're growing fast, and there's a place for anyone who wants to help. A few ways to get involved:

Fundraise for us. Start a fundraiser on Instagram or Facebook. Raise $250 or more, and we'll send you a care package as a thank-you.

Start a chapter. Bring I AM HEARD to your city and help connect local patients with each other and with our resources.

Gift a care package. Make a donation, tell us who it's for, and we'll build a package around their specific needs and send it on your behalf.

Share your story. Your experience could be exactly what someone else needs to hear. Reach out if you'd like to be featured on our Testimonies page.

Volunteer. Help at events, fundraising days, and care package builds. Companies can host a team volunteer day, too.

Ask your employer to match. Many companies match employee donations. You can also find us on workplace giving platforms like Benevity as I AM HEARD COALITION.

Shop with our partner codes. Some partners send a commission back to the coalition when you shop with our code, like Equip Foods with code IAMHEARD. Those commissions support programs like our care packages.

Partner with us. Clinicians can reach out about joining our vetted provider directory, and brands whose products help people living with chronic illness can partner with us on care packages.

Spread the word. Share our posts, join our newsletter, and send our website to someone who needs it. One share could reach the person who's been waiting to hear they're not alone.

Have another idea? Email us at info@iamheardcoalition.org or text (615) 709-4877, and we'll talk through next steps.