Parents laughing with their young daughter outdoors

Share your story

Tell us your family's story

If your family has lived through the wait for a diagnosis, you know things no statistic can say. Writing it down here helps the next Texas family get an answer sooner.

Write your story The Lone Star Genome Act

Stories from families who waited years for a diagnosis move legislators more than any statistic.

We are asking Texas to screen newborns for treatable genetic conditions. When we sit down with a legislator, the thing that changes the room is a parent describing what those years cost their family. Your story can do that, and you decide exactly how much of it we may use.

Your story

Write it in your own words

There is no right way to do this. Write as much or as little as you want, and skip anything you would rather not answer.

Your name (required) Email (required) Town or city How long did it take to get a diagnosis? Your child's condition or diagnosis Only if you have one and you want to tell us. Leave it blank if you are still waiting. Your story (required) What happened, how long it took, and what would have made the difference.

May we share your story? (required)

Please keep it private. It is just for Bluebonnet Genome Foundation. You may share it, with no names at all. You may share it using my first name. You may share it using my full name.

I would also be willing to

Speak with a Texas legislator or at a hearing. Be contacted by a reporter.

Please do not send medical records, test results, or genetic test files here. A condition's name is all we need. We cannot give medical advice. See our privacy policy.

Your permission

What happens to what you write

You decide how it is used
Nothing is published unless you told us on this form that we could, and we use only the permission you chose. If you asked us to keep it private, it stays private.
You can change your mind
Write to info@bluebonnetgenome.org any time and we will stop using your story, correct it, or delete it.
We never sell it
What you send us stays in the United States. It is never sold, and it is never shared with anyone outside Bluebonnet Genome Foundation without your permission.

Tell us your family's story

Write it in your own words

What happens to what you write

You decide how it is used

You can change your mind

We never sell it

Where would you like to go next?