The National Institutes of Health define rare diseases as conditions that affect fewer than 200,000 people. But for families facing one of these diseases, like... more
All blog posts tagged with "Beckwith-Wiedemann Syndrome"
March 25, 2021
As the Alex’s Lemonade Stand Foundation (ALSF) Director of Science, I work to evaluate our funded research projects to track progress and find gaps in funding so that we can direct more research dollars to the largest areas of need, and... more
March 4, 2020
When Lilly faced surgery after relapsing, her family made the decision to donate extra tumor tissue to research instead of throwing it away.
“We hope that Lilly’s... more
September 12, 2019
Every day, everywhere, children are diagnosed with cancer. Right now, children are in hospitals receiving frontline treatment following a diagnosis. Other children are beginning a clinical trial following a relapse. Still others face... more
July 3, 2019
Last year, we shared the story of 14-year-old Eden Green, who loves to take photos and dance. Eden was in treatment for a form of childhood cancer so rare, that doctors did not have a clinical name for it. After 4 months of... more
December 17, 2018
by Trish Adkins
For Eden, the trouble began when she was 10 years old. The trouble had a name: pain. It seemed normal at first—maybe a side effect from dancing or growing. But then it never went away and then, suddenly... more
December 14, 2018
Children with certain types of hard-to-treat childhood cancers just got another huge dose of hope. Last week, the U.S. Food and Drug Administration (FDA) granted accelerated approval to a drug called... more
December 3, 2018
by Adam Paris
Eden is a 13 year old who loves to shoot photos and smile for her own snapshots. After being unable to walk or practice her favorite activity, dancing, for nearly a year, she was... more
November 29, 2018
by Trish Adkins
In September, Alex’s Lemonade Stand Foundation (ALSF) called over 90 top scientists, pediatric oncologists and researchers from around the world to gather in Philadelphia to discuss the big question:... more
October 16, 2018
Alex’s Lemonade Stand Foundation (ALSF) has declared a war on childhood cancer.
Every day of... more
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