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Beckwith-Wiedemann Syndrome (BWS) is a rare genetic disorder. For certain types of BWS, up to 25% of children will develop cancer, most commonly liver and kidney cancer. We are participating in Alex's Million Mile to help move us closer to finding a cure for all children with cancer!
Funds from the Team BWS will support the following:
- BWS Educational Material – The BWS educational coloring book sponsored by ALSF and Children’s Hospital of Philadelphia is now available in Spanish, Italian, Portuguese, Chinese, and Hebrew! BWS education sheets discussing the diagnosis, genetic causes, and management of BWS (Available in English, Spanish, and Portuguese). https://www.research.chop.edu/bws-educational
- The new BWS animated version of the coloring book, explaining the basic features and genetics about BWS. Check it out here: https://www.chop.edu/video/beckwith-wiedemann-syndrome-bws-overview
- BWS Registry has enrolled hundreds of families from across the US and around the world. We have connected families with local specialists and with nearby families for support. If you are interested in learning more or joining the registry, email us at [email protected] or visit https://www.research.chop.edu/bws-registry
- Other genetic disorders including WAGR Syndrome
Recent publications include:
- New BWS tumor screening guidelines: http://clincancerres.aacrjournals.org/content/23/13/e115
- Perspectives on the BWS diagnostic journey: http://pediatrics.aappublications.org/content/141/3/e20170475
- Parent Perspectives on Tumor Screening: https://www.ncbi.nlm.nih.gov/pubmed/29204812
Find out more about our BWS Heroes here! https://www.alexslemonade.org/campaign/beckwith-wiedemann-syndrome-fund-alsf