Who we are
Beckwith-Wiedemann Children’s Foundation Int’l (BWCFI) has been educating and assisting families diagnosed with BWS since 1998. Our mission is to provide the correct information about BWS –at the initial diagnosis and throughout the child’s life.
BWCFI’s primary purpose is to provide educational and reference resources for families and individuals diagnosed with BWS. However, we can provide some of the following additional services as requested to families on an “as-needed” basis.
- Travel assistance for BWS-related surgeries
- Referral to physicians, professionals and medical facilities experienced with BWS.
- Financial Grants (based on financial need and on an individual basis)
- Help with insurance claim denial for BWS-related claim
Please contact us if we can help you with any of the subjects above or if there is something not listed that concerns you and your family.
What is Beckwith-Wiedemann Syndrome?
Beckwith-Wiedemann Syndrome (BWS) is a condition that affects many parts of the body. It is classified as an overgrowth syndrome, which means that affected infants are considerably larger than normal and continue to grow and gain weight at an unusual rate during childhood. Growth begins to slow by about age 8 and adults with this condition are not always unusually tall. In some children with Beckwith-Wiedemann Syndrome specific parts of the body may grow abnormally large, leading to an asymmetric or uneven appearance. This unusual growth pattern is known as hemihyperplasia.
Beckwith-Wiedemann Syndrome affects an estimated 1 in 14,000 newborns worldwide. The condition may actually be more common than this estimate because some people with mild or unusual symptoms are never diagnosed.
The signs and symptoms of Beckwith-Wiedemann Syndrome vary among affected individuals. Many people with this condition are born with an opening in the wall of the abdomen (an omphalocele) that allows the abdominal organs to protrude through the navel. Other abdominal wall defects, such as a soft out-pouching around the belly button (an umbilical hernia), are also common. Most infants with Beckwith-Wiedemann syndrome have an abnormally large tongue (macroglossia), which may interfere with breathing, swallowing, and speaking. Other major features of this condition include abnormally large abdominal organs (visceromegaly), creases or pits in the skin near the ears, low blood sugar (hypoglycemia) in infancy, and kidney abnormalities.
Children with Beckwith-Wiedemann syndrome are at an increased risk of developing several types of cancerous and noncancerous tumors, particularly a rare form of kidney cancer called Wilms tumor, a cancer of muscle tissue called rhabdomyosarcoma, and a form of liver cancer called hepatablastoma.
Tumors develop in about 5-10 percent of people with this condition and almost always appear in childhood. Older children and adults are much less likely to have serious medical problems associated with the condition.
Screening protocols are an important part of medical issues for the BWS family. Current protocols are the following:
- Abdominal ultrasounds every 3 months until age 8
- AFP blood testing every 6 weeks until age 4
These protocols have been in place for decades and have saved countless lives by catching the two most common cancers to which BWS children are prone (Wilms tumor and hepatablastoma) early. This allows treatment to begin at a time when the malignancy is small and very treatable. Read more about this aspect of BWS at cancer.net
You are not alone
Finding reliable information and resources on BWS can be challenging. BWCFI hopes to help with this by providing families with valuable information through conferences, informational videos, and the internet. Beckwith-Wiedemann Children’s Foundation International, a US Organization, is in partnership with many organizations worldwide. Here are a few our partners:
For more information about BWS check out our YouTube channel or request a free DVD.
Jennifer M. Kalish, MD PhD
Division of Human Genetics
The Children’s Hospital of Philadelphia
3501 Civic Center Blvd, CTRB Rm 3028
Philadelphia, PA, 19104
Rosanna Weksberg, MD, Ph.D. | firstname.lastname@example.org
Cheryl Shuman, MS, CGC Director | email@example.com
Germany & Switzerland
Our FREE BWS DVD covers all the major aspects of BWS from doctors, patients, and others experienced in the treatment of BWS, and is available at no cost. This DVD has been made possible by a donor that continues to fund the project by providing free worldwide postage. Fill out our contact form request your copy. DVDs are mailed out each month.
Beckwith-Wiedemann Children’s Foundation International is located in Portland, Oregon
Click here to support BWCFI. Donations are appreciated, and thank you for your support!
Beckwith-Wiedemann Children’s Foundation International is a non-profit 501(c)(3) corporation headquartered in the state of Oregon. Donations are tax deductible to the full extent allowed by law.