A few resources to help you on your journey with Beckwith Wiedemann Syndrome
1. Join the Beckwith-Wiedemann Support group on Facebook.
There are 1500 families from all over the world that have joined the group. It has been the biggest blessing to have the support of others who know exactly how I feel and what I am going through. I still don't know how we would have made it to where we are without this collection of members who I now consider my Facebook family! You can ask questions, post prayer requests, or simply vent what is on your mind because we have all been there and we will give you some words of encouragement and a shoulder to lean on.
2. Beckwith-Wiedemann Children's Foundation
Find information on Beckwith-Wiedemann Syndrome, order a free DVD about BWS, and stay up to date on recent news and research.
3. American Society of Clinical Oncology
The website provides detailed information regarding the cancer risk that coincides with Beckwith-Wiedemann Syndrome.
4. Federal Assistance Program
If you need federal assistance with health care costs, visit the website Insure Kids Now for more information on what your state has to offer.
5. A note from Dr. Bruce Beckwith
Dr. Beckwith is renowned for his research leading to the diagnosis of Beckwith-Weidemann Syndrome. You can read a copy of his letter regarding BWS.
6. Find out where other BWS families live
Thank you to Tanya for putting this together so we can see where other BWS families live.
7. Feeding Matters
I highly recommend you visit this website if you are struggling with feeding issues. Their provider search directory is worldwide and they even advocate for parents and help connect you to services for your child.