Regenerative Therapy Access Program
For years, people living with syringomyelia, Chiari malformation, EDS, and POTS have heard the same thing: manage it and wait for the research. We don’t think waiting should be the only option.
Through this program, we partner with carefully vetted clinics so selected members of our community can receive regenerative therapies, like stem cell therapy, at no cost to them. Then, with their consent, we follow how each person does over time, so every treatment adds to what we know.
Applications are not open yet. Join our newsletter to hear first when they are.
We’ve been told to wait.
Surgery helps a lot of people. But “manage it and wait for the research” can’t be the only answer we have.
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0
POTS
FDA-approved medications for POTS. Every prescription used to treat it is off-label.1
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68%
After Chiari decompression
In a long-term follow-up study, 94% of patients improved after surgery, but 68% were still left with symptoms that hadn’t fully resolved.2
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$5,118
Cash only
Average advertised price of a single stem cell treatment among U.S. businesses that listed prices, usually paid out of pocket.3
Angela is why we stopped waiting.
Dr. Angela Santoro, DPT, is a physical therapist, one of our original board members, and someone living with syringomyelia and POTS herself.
After stem cell therapy, Angela reported about an 80% reduction in her symptoms. Watching that happen to one of our own is what pushed us to stop talking about access and start building it.
One person’s self-reported experience. Individual results vary.Access now. Evidence over time.
The program does two things at once, and each one depends on the other.
Treatment at no cost to you
Selected community members receive treatment at a vetted partner clinic at no cost to them. We also cover flights, ground transportation, and lodging during the treatment window, so distance and money don’t decide who gets care.
Outcomes that count
With each person’s consent, we collect the same baseline and follow-up information before and after treatment, using the same measures at every partner clinic. That way results can be compared instead of guessed at. De-identified findings are shared with our medical advisory board.
If this program ever becomes unnecessary, it did its job.
The long-term goal is to document enough real-world outcomes to support proper research, regulatory review, and eventually insurance coverage, so access stops depending on a giveaway or a bank account.
How it works
We vet the clinic
Every prospective partner is reviewed against our written checklist: licensure, the regulatory status of each product, lab and manufacturing standards, safety protocols, pricing, and willingness to track outcomes.
We sign a partnership agreement
A written agreement, reviewed by legal counsel, defines scope, data sharing, and responsibility. The clinic is solely responsible for medical decisions and treatment.
You apply through I AM HEARD
When applications open, community members apply with us. We confirm diagnosis documentation and general eligibility.
The clinic screens independently
The clinic does its own medical evaluation and makes its own eligibility decision. We never override or influence that judgment.
Consent and treatment
Informed consent and treatment are handled entirely by the clinic, under its own standard of care.
We follow up
We collect standardized baseline and follow-up information from each participant and share de-identified, combined results with our medical advisory board.
What we are, and what we aren’t
I AM HEARD Coalition does not provide, perform, or bill for medical treatment. Our role is vetting clinics, coordinating eligibility and logistics, and documenting outcomes. Every medical decision belongs to the treating clinic and its licensed providers.
More clinics. Same high bar.
We’re working to add partner clinics so we can reach more people. Every clinic, including our first, has to meet the same written standard before we refer a single patient, and each partnership is reviewed against it again over time.
Run a clinic and want to partner? Email info@iamheardcoalition.org.
- Licensed, physician-led facility with verifiable credentials
- Clear disclosure of every product offered and its FDA regulatory status
- Cells processed by a named, certified lab, with quality testing before treatment
- Written informed consent that covers risks and alternatives
- A defined plan for monitoring and reporting adverse events
- Transparent pricing, explained upfront
- No unsupported cure claims in the clinic’s own marketing
- Willingness to track outcomes and share de-identified data
- Clean regulatory and legal history
Vita Nova set the bar.
Our first partner clinic is Vita Nova Stem Cell Professionals in Franklin, Tennessee. Vita Nova is led by its founder and medical director, Dr. Hemal V. Mehta, MD, who is board-certified in Physical Medicine & Rehabilitation, fellowship-trained in Interventional Spine and Pain Medicine, and has 25 years in clinical practice.8
The clinic is an authorized provider of Dezawa MUSE cells, and every stem cell patient there receives documentation of their cell count and viability.9 Thank you to Dr. Mehta and the entire Vita Nova team for helping make this program real.
- September 2026
Program announced, with Vita Nova as our launch partner.
- October 12, 2026
Jehanne, our first awarded patient, received her MUSE cell treatment at Vita Nova.
- Coming next
More partner clinics, published eligibility criteria, an open application window, and updates as follow-up information comes in.
What are MUSE cells?
MUSE stands for Multilineage-differentiating Stress-Enduring. Prof. Mari Dezawa’s team at Tohoku University in Japan first described these cells in 2010.4 They’re a small subgroup found among mesenchymal stromal cells (MSCs), about 1 to several in every 100.5
- 01
Pluripotent-like
A single MUSE cell can form cell types from all three germ layers, yet in the original study they did not form tumors when implanted in mice.4
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Drawn to damage
Given by IV, they home to injured tissue instead of getting trapped in the lungs like most MSCs.5
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Donor-friendly
In clinical trials, donor MUSE cells were given without tissue matching or anti-rejection drugs.5
MUSE cells are not FDA-approved. The published human trial results so far come from CL2020, a donor product made in Japan. MUSE cells offered in U.S. clinics are a different product.6 That gap is a big part of why we track outcomes.
Questions to ask any clinic
Whether or not you ever apply to our program, these are worth asking anyone who offers you a regenerative therapy. The FDA also keeps a plain-language guide for patients.7
- Is this treatment part of a registered clinical trial? If so, what’s the registry number?
- What exactly is the product, where is it made, and how is it tested before it reaches me?
- What is its FDA status for my condition?
- What are the risks, and what happens if I have a bad reaction?
- What is the total cost, and what does it include?
- How will you follow up with me after treatment?
Is this a clinical trial?
No. It’s an access program with structured follow-up, closer to a patient registry than a clinical trial. It’s meant to feed into more rigorous research, not replace it.
Are these therapies FDA-approved?
No. Stem cell therapy and other regenerative therapies, including MUSE cells, are not FDA-approved to treat syringomyelia, POTS, Chiari malformation, EDS, or related neurological conditions.
Does I AM HEARD provide the treatment?
No. Treatment is provided entirely by the partner clinic and its licensed providers. We vet clinics, coordinate eligibility and logistics, and document outcomes.
What does an award cover?
Treatment at a vetted partner clinic at no cost to the recipient, plus flights, ground transportation, and lodging during the treatment window, and support with follow-up.
Can I apply now?
Not yet. We’ll publish eligibility criteria and the application window before applications open. Join our newsletter to hear first.
How are recipients chosen?
Recipients will be chosen using published, objective criteria. The partner clinic then does its own independent medical screening, and that decision belongs to the clinic alone.
Will my information be shared?
Follow-up information is shared only in de-identified, combined form. Your story is shared publicly only if you give written permission.
I run a clinic. How do we partner?
Email info@iamheardcoalition.org. Every clinic goes through the same vetting process and signs a written partnership agreement before any patient is referred.
Help fund the next award.
This program runs on the support of our community. Every gift helps send the next person to treatment and pays for the follow-up that makes their outcome count. You can also share this page with anyone in a position to help, or start a chapter where you live.
Disclaimer
I AM HEARD Coalition does not provide medical advice, diagnose conditions, recommend or endorse a particular treatment, or guarantee any medical outcome. Stem cell therapy and other regenerative therapies may not be appropriate for every individual and can carry potential risks. There are no guarantees of safety, effectiveness, symptom improvement, or any specific result.
Stem cell and regenerative therapies, including MUSE cells, are not FDA-approved to treat syringomyelia, POTS, Chiari malformation, EDS, or other neurological conditions. Experiences shared on this page are individual and self-reported, and results vary. This program is not a clinical trial. Treatment decisions should be made directly with qualified, appropriately licensed healthcare professionals who can evaluate your individual medical history and needs.
Sources
- Zhao S, Tran VH. Postural Orthostatic Tachycardia Syndrome. StatPearls. ncbi.nlm.nih.gov/books/NBK541074
- Wetjen NM, Heiss JD, Oldfield EH. Time course of syringomyelia resolution following decompression of Chiari malformation Type I. J Neurosurg Pediatr. 2008. pubmed.ncbi.nlm.nih.gov/18352779
- Turner L. The American stem cell sell in 2021. Cell Stem Cell. 2021. cell.com/cell-stem-cell
- Kuroda Y, et al. Unique multipotent cells in adult human mesenchymal cell populations. PNAS. 2010. pnas.org/doi/10.1073/pnas.0911647107
- Minatoguchi S, et al. Stem Cells Translational Medicine. 2024. pubmed.ncbi.nlm.nih.gov/38560897
- MuseCell Innovations. Information for patients, including FDA status. musecellinnovations.com/patients
- U.S. FDA. Important Patient and Consumer Information About Regenerative Medicine Therapies. fda.gov
- Vita Nova Stem Cell Professionals. Hemal V. Mehta, MD. vitanovatn.com/hemal-v-mehta-md
- Vita Nova Stem Cell Professionals. vitanovatn.com