What we're building, and where we actually are

We publish this because families deserve to know what's real and what isn't. Nothing here is finished — this page is our attempt to be honest about exactly how unfinished, and what we're doing about it.

The goal

“Hope, health, and opportunity for real people in real communities.”

Pillars

Everything we build falls under one of these. Each pillar links to the milestones that make it real.

Knowledge that's actually sourced

Every factual claim on this site should trace back to something real — a study, a guideline, a government program page. If we can't source it, we don't publish it as fact.

1 shipped

CADASIL knowledge baseShipped

Navigation that adapts

The site should meet you where you are — newly diagnosed, mid-crisis, or years into caregiving — instead of handing everyone the same wall of text.

1 in progress

Adaptive navigation toolingIn progress

Money found and moved

Real funding, correctly matched, actually reaching the families who need it — and our own finances built to be worth trusting once there are finances to show.

1 shipped · 1 in progress

Grants & funding navigatorShipped
501(c)(3) determinationIn progress

Community that holds

A place where people don't have to explain CADASIL from scratch, and where we tell the truth about what's working and what isn't — this page included.

2 shipped

Newsroom (/press)Shipped
Public roadmap (/roadmap)Shipped

Research we can trust

Content checked against the literature today, and against a credentialed clinician's line-by-line review once we have one in place.

1 next

Clinical review of CADASIL contentNext

Milestones

Every milestone across every pillar, in one list. This is the part we update as the work actually changes.

CADASIL knowledge base

Shipped

A sourced, plain-language hub covering diagnosis, symptoms, caregiving, and what to ask a doctor.

Knowledge that's actually sourced · Q3 2026

Grants & funding navigator

Shipped

A searchable tool matching families to real funding sources — 16 live funders as of this update, more added as each one is verified.

Money found and moved · Q3 2026

Newsroom (/press)

Shipped

A real place for journalists to find facts, contacts, and a boilerplate — not just a contact form.

Community that holds · Q3 2026

Public roadmap (/roadmap)

Shipped

This page — what's built, what's next, and an honest record of what we said we'd do.

Community that holds · Q3 2026

Adaptive navigation tooling

In progress

Tools and pages that adjust to your situation instead of asking everyone to read the same page the same way.

Navigation that adapts · Q4 2026

501(c)(3) determination

In progress

Filed with the IRS. The timeline for a determination letter isn't something we control, so this date is a target, not a promise.

Money found and moved · Q4 2026

Clinical review of CADASIL content

A credentialed clinician reviewing our medical content line by line. We're recruiting the first one now.

Research we can trust · Q4 2026

What we said, and what actually happened

The part of a roadmap most organizations skip. We're keeping score on ourselves on purpose.

DoneQ3 2026

What we said

We wanted a real, working foundation site — sourced CADASIL information and an actual funding-matching tool — before we ever asked anyone for a donation.

What happened

The site shipped with a working CADASIL knowledge base and a grants navigator listing 16 live funders. Donations are intentionally still off: 501(c)(3) status isn't final, so there's no legal entity yet to receive gifts in the Foundation's name. You can follow the build instead.

What this costs

We don't yet have a finance system built for the Foundation as its own legal entity — 501(c)(3) status isn't final, so there's no independent budget or audited financials to publish. Once status is granted and money starts moving through the Foundation, real numbers go here instead of this note.