The Fragile X Carrier Act

Fragile X is the most common inherited cause of autism — and most families have never heard its name.

We're working to change that in California. The Fragile X Carrier Act is our push to make sure every family hears the words "Fragile X" early — before it explains a child they love, or changes how a family begins.

Why we're doing this

Our son Shawn has Fragile X. It runs through families — quietly. When a mom learns the name, she isn't just learning about her child's autism: it's inherited, so it can touch her own health, her sisters, her mother, and the children not yet born. Every mom raising an autistic child deserves to know the word. No child should just be called "autistic" when the real word was Fragile X.

What the Carrier Act does

Draft prepared for introduction in the California Legislature, 2025–26 session — now in clinical and legislative review.

  • A simple question first. Every prenatal and preconception visit includes a brief, voluntary family-history questionnaire — a few minutes, no needles.
  • Testing offered when history says look closer. If family history flags risk, the patient must be offered a voluntary FMR1 DNA test (about $200), with written informed consent and a genetic-counseling referral.
  • Covered by Medi-Cal. The test becomes a covered benefit — so cost is never the reason a woman doesn't find out.
  • Privacy locked. Results are protected by California's medical-confidentiality and genetic-nondiscrimination laws.
  • Knowledge, not choice. Nothing in the act directs anyone's reproductive decision. Every step is voluntary and can be declined for any reason.
  • Why it matters: 1 in 151 women carries an FMR1 premutation — and it can affect her own health, not just her children's.

Read the bill

The Fragile X Carrier Act, page 1The Fragile X Carrier Act, page 2The Fragile X Carrier Act, page 3The Fragile X Carrier Act, page 4The Fragile X Carrier Act, page 5

Tap any page to read it full size.  Download the full bill (PDF)

Endorsed by

Clinician, researcher, and advocate endorsements are being gathered now and will appear here — each one confirmed with the endorser before it's published.

Are you a clinician, researcher, or genetic counselor who wants to endorse the Fragile X Carrier Act? Endorse the Fragile X Carrier Act — send your name, title, affiliation, and one sentence in your own words. Endorsements are listed as personal unless your institution has approved its name in writing.

Bring this to your state

The Fragile X Carrier Act is written for California — but the model works in any state. We can reproduce this bill for your state. Want to bring it home? Just message us and we'll help you get it moving.

Add your name

California residents: add your name in support using the form below. Please include your ZIP code in your message — legislators count constituents, and your ZIP is what makes your voice count in your district.