Lauren's Journey: Conquering Arteriovenous Malformation

09/07/2026

Lauren and a bunch of (hopefully well fed) gators. 🐊

09/06/2026

Snakes and gators, oh my.

08/25/2026

This is wonderful. Family House is truly a blessing for families like ours.

06/18/2026

What started as lingering headaches after a football concussion turned into a life-changing discovery for Logan.

As a freshman in high school, Logan struggled with migraines that wouldn't go away. After months of appointments and searching for answers, an MRI revealed an arteriovenous malformation (AVM) in his occipital lobe.

Suddenly, Logan and his family were faced with difficult decisions and uncertain risks. After consulting with specialists at NYU, he underwent brain surgery in July 2024 to remove the AVM.

Today, Logan is thriving as a high school junior and looking forward to returning to the football field for his senior year.

His story is a powerful reminder of the importance of listening to your body, advocating for answers, and never giving up hope.

Read more about Logan's journey: https://niekrofoundation.org/logan-avm-survivor/

06/15/2026

Natasha Hepburn describes her 9-year-old son Nathan as a vibrant and joyful soul, even when he’s faced with life-altering circumstances. When Nathan was 5, he suffered a seizure, and his health quickly took a turn for the worse. Nathan was then diagnosed with an extremely rare and life-threatening...

06/01/2026

My youngest child, Hannah, was seven months old the day my husband, Robert Ostrea, MBA, and I sat across the desk from a geneticist at one of the top children's hospitals in the US. The path we had to take had been long.

05/05/2026

Not every headache is the same.
And that matters.

A sudden, severe headache—the worst of your life—can be a sign of hemorrhagic stroke.

Hemorrhagic stroke IS stroke. Don’t wait. Get scanned.

04/15/2026

02/28/2026

I support Rare Disease Day!
February 28, 2026

AVM is a Rare Disease occurring in only

02/08/2026

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