Schaaf-Yang Syndrome News

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SYS (14) |

'It’s a Beautiful Gift I Never Expected' Says SYS Hero and Mom

A special blog contribution from Roya Malaekeh. People often ask what it was like getting a diagnosis, especially since we had endured a year without one. When I got that phone call from the geneticist, it felt like a boulder was lifted off my chest ...

Exploring How MAGEL2 Affects the Brain—And What Happens When It Doesn’t Work

What does the MAGEL2 gene actually do in the brain—and how does its dysfunction lead to the symptoms we see in Schaaf-Yang syndrome (SYS)?
announcing-the-launch-of-the-global-schaaf-yang-syndrome-registry

Announcing the Launch of the Global Schaaf-Yang Syndrome Registry

FPWR is pleased to announce the launch of the Global Schaaf-Yang Syndrome Registry, an online registry for individuals with Schaaf-Yang syndrome (SYS) and their parents/caregivers.

'She Gets Stronger Every Day' Says SYS Mom Inspired by Daughter

A special blog contribution from Stephanie McDade. Last week Gibson rode a tricycle. She pedaled and steered on her own for a good five minutes on the sidewalk of our city block. This is real progress for a 8-year-old who doesn’t walk independently a...