BECKWITH-WIEDEMANN CHILDRENS FOUNDATION INTERNATIONAL

Our work is never "done" as daily new babies and children are diagnosed with Beckwith-Wiedemann Syndrome. Even now in the 21st century, many physicians and professionals do not know the vital screening protocols nor do they often agree with the diagnosis. The BWCFI exists for BWS families struggling to get the initial diagnosis and/or those who have a diagnosis but cannot get approval from their medical team for screening and treatment.

Until NO family struggles to get a diagnosis and subsequent screening, we will make ourselves available to assist in any way BWS families may need us. This is very important since this is a rare syndrome (1 in approx. 10,000 births) and these families need to know that they are not alone.

We have a presence on social media platforms as well as our own web page (www.beckwithwiedemann.org) to reach families worldwide diagnosed with Beckwith-Wiedemann Syndrome. With the help of 21st century technology, it is now easier to reach around the globe to assist families requesting our help.

One recent case was assisting a family from the country of Georgia to get additional screening following his apparently routine tongue surgery (common for our BWS babies). Stranded in the US during a pandemic, we reached out to our donors to secure funding to assist this family get additional cancer screening which revealed liver cancer (something to which our children can be prone). Following this additional screening and the advocacy of the BWCFI, this child was admitted to St. Jude's Hospital and has totally recovered and returned to his home country.

With the above strategies in place at the present time, we ARE meeting our goals to spread knowledge and correct information about Beckwith-Wiedemann Syndrome.

However, there is always room for improvement and additional avenues to connect with the BWS community. Through additional fundraising, we would like to be able to supply a copy of our BWS DVD to each and every geneticist and pediatrician in the United States and beyond to help educate about BWS and the screening protocols. One way we have discussed doing this is by attending pediatric conferences and supplying our DVD in the materials supplied at those conferences along with a short brochure outlining the syndrome.

Being volunteers, we are ready, willing and able to be available to accomplish our goals as the funding allows.

We are daily accomplishing our initial goals to provide the correct and complete information on Beckwith-Wiedemann Syndrome (BWS) as we interact with the BWS community through our DVD and online support groups.

However, as we stated before, each day new families are touched by BWS. Even though each of those children is wonderfully unique, the basic questions and needs are the same. We are here to help those families navigate the early troubled and scary seas of the BWS world. We will strive to keep supplying help and support as long as families need us.

In reality, we will never completely accomplish our goals as long as families struggle with diagnosis and treatment surrounding Beckwith-Wiedemann Syndrome.