Who is behind Wimly
Built by someone who lives with this. Governed by everyone it serves.
Wimly is not a product built for a market. It is infrastructure built by someone with SCA, shaped by founding supporters with SCA, and overseen by scientists who have spent careers studying it. That alignment is not incidental — it is the reason the incentives stay right.
The founder
Håkan Göransson is a software engineer and entrepreneur based in Sweden. He was diagnosed with SCA3/MJD — spinocerebellar ataxia type 3, also known as Machado-Joseph disease — around ten years ago; symptoms are, so far, moderate. In his family, SCA is not rare: fifty-two direct descendants have inherited the condition across six generations. Wimly began as the question those numbers made unavoidable — what could patients do together, with the right infrastructure, that none of them could do alone.
After his diagnosis, Håkan spent years in the peer-reviewed literature — not looking for a cure, but for what could be done with what already exists. He found a pattern. He tested it on himself, rigorously, tracking observations daily. He found that sharing what patients know — the practical, granular, daily observations that never reach a clinical record — could matter. Not just to one person. To everyone navigating the same disease. Wimly is the infrastructure to make that sharing structured, sustained, and useful.
"I didn't choose to have SCA. Neither did you. But we can choose what we do about it."
— Håkan Göransson, Wimly founder · SCA3/MJD · Sweden
Why the incentives stay right
The founder who builds Wimly lives with SCA. The founding supporters who shape what it does live with SCA. The scientists who oversee it have spent careers studying SCA. When the person building something, the people funding and using it, and the people reviewing it all need the same thing, the commercial and the patient interest become the same interest.
This is also why Wimly is community-funded and not venture-backed. Venture capital would not fund this — the addressable market is too small for their models. Pharmaceutical funding would compromise the independence the community requires. The only people with both the motivation and the authority to build this are the people it serves.
Scientific oversight
Scientific Advisory Board
The Scientific Advisory Board is composed of neurologists, neuroscientists, and biomedical researchers specialising in SCA and rare disease. Board members review all published content for clinical and scientific integrity, oversee the research participation pathway, and hold independent advisory roles with no commercial conflicts.
Scientific rigour is not an add-on to Wimly's design — it is what makes the platform's data valuable to clinicians and researchers. The SAB is the mechanism that ensures that standard is maintained.
Governance
How Wimly is kept accountable
Data ethics advisory board
An independent standing board that oversees the platform's data governance, consent architecture, and community standards. Co-Steward patient organisations hold permanent seats. The board's mandate is to protect the community's trust in how its data is handled — not as a compliance mechanism, but as the primary risk management function.
Community Council
Twenty to thirty representatives from active disease communities, forming the primary governance body for community standards, platform priorities, and the allocation of community intelligence resources. The Council is a feedback system, a peer referral engine, and a structural check on the platform's direction simultaneously.
Data Trust Covenant
A published document defining the permissible categories of data use, the conditions under which research access is granted, and the transparency obligations Wimly holds to the community. All research data access is governed by its terms. All Co-Steward and research partner relationships operate within it.
Get early access
Wimly is here.
Wimly v1 is approaching. Founding supporters get access on day one and a role in shaping how the platform develops.