I'm an ALSF researcher devoted to studying Beckwith-Wiedemann Syndrome. I am participating in Alex's Million Mile to help move us closer to finding a cure for all children with cancer!
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.
Educational Materials:
This summer, Dr. Kalish and the BWS registry team developed an educational coloring book to help families understand BWS. Rachel Ottman co-authored and illustrated the coloring book. This project was made possible through the support of ALSF and The Children’s Hospital of Philadelphia, as well as the BWS families and the community who supports them.
The coloring book is available for download on the CHOP website:
www.chop.edu/conditions-diseases/beckwith-wiedemann-syndrome/health-resources
or by contacting BWS@chop.edu.
Registry News:
Over the past year, the BWS registry has enrolled families from over 34 states and 14 countries. We have connected families with local specialists and with nearby families for support as needed. If you are interested in the BWS Registry, please contact Kelly Duffy at duffyka@email.chop.edu.
Research News:
Dr. Kalish and Dr. Deardorff recently published a commentary on tumor screening in BWS.
https://www.ncbi.nlm.nih.gov/pubmed/27518916
New research on urologic (kidney) findings was published by Dr. Kalish and colleagues.
https://www.ncbi.nlm.nih.gov/pubmed/27614119
New research on improving prenatal diagnosis of BWS after IVF by Dr. Kalish and colleagues
http://www.fertstert.org/article/S0015-0282(16)62462-7/fulltext?rss=yes
For my AMM 2014 video click here: Alex's Million Mile: Childhood Cancer Researcher, Jenn Kalish
Find out more about our BWS Heroes here: https://www.alexslemonade.org/campaign/beckwith-wiedemann-syndrome-fund-alsf
Dr. Kalish describing her research on Beckwith-Wiedemann Syndrome