NATIONAL MONTH

Sturge-Weber Syndrome Awareness Month

On Sturge-Weber Syndrome Awareness Month, we listen louder, learn more, and make sure no one feels invisible.

WHEN

May each year

Roots: Promoted by the Sturge-Weber Foundation
Vibe: Community-driven awareness and support
Hashtag: #SturgeWeberSyndromeAwarenessMonth

Send a card Email a friend

Ways to celebrate

Small, doable ways to celebrate Sturge-Weber Syndrome Awareness Month.

Share one reputable resource with your network.
Donate to a patient-led organization working on sturge-weber syndrome awareness.
Check in on someone you know who's living with it.
Book the screening or appointment you've been putting off.
Listen more than you speak.

Fast facts

About 1In 50,000 births

Caused by a mutation in the GNAQ gene

The story

Sturge-Weber Syndrome (SWS) is a rare neurological disorder characterized by a facial birthmark and neurological abnormalities. This condition generally arises from a neurological abnormality in the vascular system, impacting various brain functions. It is caused by a somatic mutation in the GNAQ gene, and the implications for those affected can be profound and lifelong.

Read the full story

May is dedicated to raising awareness about SWS, emphasizing the importance of education, advocacy, and support for individuals and families facing this challenge. The Sturge-Weber Foundation plays a vital role in providing resources and fostering community among those affected. Through awareness events, the foundation aims to highlight the unique struggles and strengths of those living with this condition.

Families with children diagnosed with SWS often navigate a complex landscape of medical care, educational needs, and social interactions. Awareness Month serves as a reminder to support these families, offering understanding and assistance in their journeys. By sharing stories and facts, we can create a more informed and empathetic community.

As we observe Sturge-Weber Syndrome Awareness Month, it is crucial to amplify the voices of those affected. Connecting through social media, local events, and educational campaigns helps foster solidarity and support. Whether it's through fundraising or simply sharing information, every effort counts in making a difference.