Video created for a past awareness event provided by Lauren R. Photos provided by parents.
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 We've Achieved
From planting a seed to making lifetime commitments, we each make a difference.
- Grew from a yahoo chat group to a Facebook support group with over 3,300 members in February 2017: 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.
- Fundraising for
- Family Support
- Medical Research
- Individual Family Fundraisers