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. 

    In the search field on Facebook type in "Beckwith Wiedemann Syndrome. It is a closed group so you will need to ask to join. You can also click on the link below to go directly to their page    https://www.facebook.com/groups/78357624606/    

 

In the search field on Facebook type in "Beckwith Wiedemann Syndrome. It is a closed group so you will need to ask to join. You can also click on the link below to go directly to their page 

https://www.facebook.com/groups/78357624606/

 

2.  Beckwith-Wiedemann Children's Foundation

http://www.beckwith-wiedemannsyndrome.org/

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

http://www.cancer.net/cancer-types/beckwith-wiedemann-syndrome

The website provides detailed information regarding the cancer risk that coincides with Beckwith-Wiedemann Syndrome.

 

4. Federal Assistance Program

http://www.insurekidsnow.gov/

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

http://www.beckwith-wiedemann.info/drbeckwith.html

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

http://bit.ly/1bn6a0I

Thank you to Tanya for putting this together so we can see where other BWS families live.

 

7. Feeding Matters

www.feedingmatters.org

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. 

 BWS Awareness Day is April 6! Help show support by wearing yellow and sharing the website mybwsbaby.com with friends and family.

BWS Awareness Day is April 6! Help show support by wearing yellow and sharing the website mybwsbaby.com with friends and family.