Beckwith-Wiedemann Syndrome 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 Team BWS supported the following:

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

Deciphering BWS conference at the Children’s Hospital of Philadelphia (CHOP) July 21-23, 2017. Families from across the US and the world gathered to hear updates on clinical care and research from physicians and scientists at CHOP and University of Pennsylvania. http://blog.research.chop.edu/chop-hosts-deciphering-beckwith-wiedemann-syndrome-conference/ Funds from Team BWS 2018 will support the next Deciphering BWS conference at Children’s Hospital of Philadelphia to be held July 19-21, 2019.

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

BWS Registry https://www.research.chop.edu/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]

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