Beckwith-Wiedemann Syndrome Awareness

Our Mission

Out mission is to create a wave of awareness about Beckwith-Wiedemann Syndrome so that early diagnosis can be made and information is readily available to medical providers and families.

What the BWS Community Has Achieved

From planting a seed to making lifetime commitments, we each make a difference. 

  • From the small start of a yahoo chat group to a Face Book support group with over 4,000 members in January 2018. An online family of people connected from around the world.

  • An annual day of awareness with Family and Friends wearing yellow to spread awareness locally and on social media.

  • Local Meet Ups/BWS Family Picnics

  • Organized BWS Conferences

  • Families sharing their stories with local media outlets on the internet and online.

  • Local stories going viral on the internet and in magazines around the world.

  • Foundations for information and support.

  • Various Fundraising for Family Support, Medical Research, and Individual Family Fundraisers.

  • From a yahoo chat group to a Face Book support group with over 4,000 members in January 2018. An online family of people connected from around the world.

  • An annual day of awareness with Family and Friends wearing yellow to spread awareness locally and on social media.

  • Local Meet Ups/BWS Family Picnics

  • Organized BWS Conferences

  • Families sharing their stories with local media outlets on the internet and online.

  • Local stories going viral on the internet and in magazines around the world.

  • Foundations for information and support.

  • Various Fundraising for Family Support, Medical Research, and Individual Family Fundraisers.

Awareness Ideas

Rally family, friends, community, and/or medical providers to Personally get involved.

  • Participate in events

  • Host an event, the sky is the limit with ideas here.

  • Contact the local media, and share your story.

  • Initiate a Pay it Forward and share why - BWS.

  • Get your medical team involved

    • Consider one or more: OBGYN, Labor & Delivery Department at the hospital, Pediatricians, Genetics and/or Oncology Specialists, Lab/Phlebotomists, Radiology/Ultra sounds techs, Physical Therapy, Speech Therapy, Lactation Consultants

    • You could just stop in on April 6th with info, or more... all the way up to reaching out locally

  • More ideas? Contact us! We will add them here!

Items for sale

Share your business or craftiness. 

Sales can be for profit or donation, please include these details when you register.

FUNDRAISERS ARE OK!  

Participate in existing fundraisers or create your own.

Individuals and businesses are welcome!  

Fundraisers can be represented under both Shop and Events