Meet Meagan Cross

What has your AS journey looked like?

  • We live in regional Australia, and the closest capital city is a 2.5-hour flight; I noticed Molly's delays around 5 months old, but it took longer for a diagnosis. Diagnosed at 13 months, I had found AS online months before that and was unable to get any professionals to test her for it. "She doesn't look like she has AS" (are you kidding? She is the quintessential poster child!) I'm lucky that the people I dealt with during that difficult time became champions in my local community. Her eventual diagnosis put me into a state of fight that I've never really left, determined to give her the life she deserves, just as I promised her elder sister Eva. It's just a little more work with Molly. We transitioned through the young years into school, then began to learn her unique character and how AS has put obstacles in her path. As Molly moves to adulthood and more challenges arise, we are excited about the future and the opportunities that she may have. So we continue to fight. AS has brought so many wonderful people into our lives; it made us better, stronger people... and more empathetic. However, I look forward to a day when it's in the past.

How were you first introduced to FAST? Do you remember the first time you understood that there was hope for a cure? Tell us about it.

  • The night we got the diagnosis I went into an autopilot, we had an answer and now we could focus on what to do. I found Ed Weebers paper about the rescue of a mouse model and emailed him, he responded that night. Not long later I had joined the listserv and met the group of people who would form FAST & decided to start working on an Australian chapter. Before that happened we hosted a workshop with Ed in Brisbane to help educated people that there really was hope.

What parts of your life outside have been most relevant to your work on the FAST board?

  • For my work with the Registry, data science. For helping understand a bigger picture, my work with a local charity I started, Rare Friends - there are so many similarities in the challenges of rare.

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