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. 14,000 births) and these families need to know that they are not alone.

We are updating our BWS DVD this year (currently in process to secure funding) to commemorate the upcoming 10-year anniversary (2016) of the initial release in 2006.

In addition, this year for the first time we have made our DVD chapters available on social media (Facebook and YouTube) for families to have immediate access and to download and share as needed. This was our initial thought when the first DVDs were released and they were created without any restrictions on duplication. One way this can serve to spread knowledge and CORRECT information is through immediate access during medical appointments using smartphones and similar devices.

The directors are COMMITTED to serving the Beckwith-Wiedemann families worldwide in as many ways as we can.

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.

Interestingly, our success is measured only through direct contact with our families and their experiences. With the rise of social media (Facebook and the like), we can track the progress of individual families as they interact with their medical teams. When a physician or other medical professional actually requests our DVD or makes reference to it through families, we KNOW we are making an impact.

Our motto is "changing the BWS world one family at a time".

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.