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I’m participating in The Million Mile challenge in honor of our amazing daughter Nora, who last year was diagnosed with Simpson-Golabi-Behmel syndrome (SGBS). SGBS is a rare genetic disorder characterized by overgrowth and affects many parts of the body. Children with SGBS, as well as other similar overgrowth disorders, are at an increased risk of developing cancer -- most commonly liver and kidney tumors which require regular blood draws, ultrasounds and screening throughout childhood. We’re extremely grateful for the medical care and attention Nora has received to date, although so much remains unknown about the cause and impact of SGBS. Help me raise funds for Alex’s Lemonade Stand Foundation (ALSF), a non-profit organization that directly funds groundbreaking research into overgrowth disorders like Nora's while supporting the overarching goal of finding a cure for all children with cancer.
SGBS Info:
https://rarediseases.info.nih.gov/diseases/7649/simpson-golabi-behmel-syndrome
https://ghr.nlm.nih.gov/condition/simpson-golabi-behmel-syndrome
https://rarediseases.org/rare-diseases/simpson-dysmorphia-syndrome/
ALSF Funded Research:
