Tag Archives: nri

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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My journey from a patient to a scientist

I was living the life of luxury – chicken tenders were brought to me on call, buckets of toys were given to me daily and staying up until midnight was … 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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Our long journey to a SON diagnosis

She feels invincible with her floaties on. I smiled as I thought of my beautiful 7 year-old daughter, Kylie, who enjoys swimming and started public school this fall. I am filled … Full Entry »

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#FightingForMaya

As the parent of a child with a rare disorder, you quickly realize there are a lot of ups and downs. Often, the lowest lows are when the “experts” tell … Full Entry »

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