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Hi Friends!
In honor of Beckwith-Wiedemann Day and all of our daughter's BWS friends, we have a donor who is hosting a 100% MATCHING PLEDGE DRIVE.
All money will go to Dr. Kalish's groundbreaking BWS research. Please join us helping spread awareness and raise money to help our BWS community.
Why Tongue Twisters?
Many children with BWS have macroglossia (enlarged tongues) and subseuqently have trouble with feeding and breathing. Many will have tongue reduction surgery. Please join us in trying out a tongue twister as we spread awareness of BWS.
What is BWS?
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. That said, in the general population of BWS patients, the risk is 5-10%. Some children with Beckwith-Wiedemann syndrome may need to see other medical specialists. For example, children with leg-length discrepancies may require evaluation by an orthopedist. Other areas of specialty care include oncology, plastic surgery and genetics.
For additional information on BWS and to watch an awarenss video, please check out: http://www.howbigbws.com
Read about the ALSF BWS Heroes:
