Frequently Asked Questions

The I AM HEARD Coalition is a nonprofit organization focused on people affected by syringomyelia and its associated conditions. Syringomyelia remains an under-recognized and under-researched condition, with limited treatment options and far too many patients struggling to access informed care. At this coalition, we are advocates and collaborators from a wide range of medical and lifestyle disciplines, determined to help people living with syringomyelia reach better care, better information, and better support.

While we deeply value and support the broader medical and nonprofit community, we also see a clear need for change in how organizations advocate for people living with syringomyelia. At our coalition, we believe in honest accountability and patient-centered care. We are committed to speaking up when patterns of mistreatment, misdiagnosis, or dismissal of patient concerns are evident, while also uplifting providers and teams who listen, learn, and consistently meet or exceed high standards of care.

We believe resources should be used thoughtfully and transparently. Our goal is to minimize “fluff” spending and focus on financial decisions that make sense, are clearly explained, and directly benefit the community we serve.

Although syringomyelia is a specific diagnosis, we recognize that it can affect many aspects of a person’s body and everyday life. New or worsening symptoms deserve to be taken seriously and evaluated by qualified clinicians with an understanding of how spinal cord changes can impact the whole person. We encourage patients to seek thorough evaluation and to advocate for care that fully considers their lived experience.

We also believe research and real-time support must go hand in hand. High-quality research is vital and takes time, but people living with syringomyelia also need information, tools, and resources now that can positively impact their day-to-day quality of life. Our work focuses on helping patients get more out of the lives they are living today, while the research ecosystem continues to evolve.

For more details on how we aim to directly support this community, including practical assistance and future grant-based programs, please refer to our grant program information.

Donations to the coaliton support multiple areas of our work, including education and awareness efforts, program development, events, grants for special care and quality-of-life needs, and other initiatives that directly strengthen advocacy for people living with syringomyelia. Our goal is to use every dollar as thoughtfully and efficiently as possible so it truly benefits the community we serve.

We are committed to radical transparency. We plan to share regular financial updates on our platforms, including clear information about how funds are allocated and any future expenses related to staff salaries or operational needs. We believe donors and patients deserve to see how resources are actually being used.

While we recognize the importance of research and are working toward a major research project focused on less invasive care and potential future treatments, our primary focus is building and sustaining grant programs and practical support for patients right now. We want people affected by syringomyelia to feel real, tangible impact in their day-to-day lives—not just hope for the future.

The I AM HEARD Coalition brings together contributors with experience across multiple medical and lifestyle disciplines who are deeply familiar with complex conditions and their impact on daily life. While the coalition does not provide direct in-office or clinic care, we regularly use our social media channels and this website to share educational information about symptom management, questions to discuss with your clinicians, and topics patients may want to explore with their care teams.

We may also highlight providers, clinics, and resources that align with our values and community feedback. These mentions are shared for educational purposes only and should not be taken as guarantees of outcomes or a substitute for individualized medical advice. Every person’s situation is different, and we encourage you to evaluate any provider together with your own healthcare team.

In addition, our grant programs are designed to help support access to resources that may include specialized provider care or other needs, when a specific program is available and an application is approved.

We are a rapidly growing organization and we welcome support in many forms. You can help by sharing our posts on social media, signing up as a volunteer for events or fundraising days, or reaching out to collaborate on ideas and projects. If you have a specific way you’d like to be involved, please contact us by email and we’ll be glad to talk through next steps.