Tag Archives: neurology

We have our USP7 family

For most of our 7-year-old daughter Tess’s life, we’ve been on our own. Her ultra-rare mutation in her USP7 gene has no awareness day, bumper sticker or fun run. Sure, … Full Entry »

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Lexi will keep “tri-ing”

My daughter, Lexi, has been doing kids triathlons since she was 4 years old. She’s now 11. In fact, her first race was only two weeks after she got off … Full Entry »

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Posted in Community, Neurology, Neuroscience Tagged , , , ,

Reagan’s story

Our daughter, Reagan Leigh, was born in March 2007. The first few months of her life were relatively normal. Like all new parents, we were adjusting to sleep deprivation while … Full Entry »

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Why I am a passionate advocate for research in rare diseases

I am a mom of two young men, aged 18 and 16 years old. I am also the chair of the Research Support Committee of the Phelan-McDermid Syndrome Foundation (PMSF). … Full Entry »

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Posted in Awareness, Neuroscience, Neurosurgery, NRI, Surgery Tagged , ,

Preparing to stay at the Texas Children’s Epilepsy Monitoring Unit

Every day many patients and families enter Texas Children’s Hospital from a variety of cultural backgrounds, geographical locations and unique healthcare experiences. To best meet the unique needs of a diverse patient population, … Full Entry »

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