Tell your story

Share the story of your journey with blepharospasm and its related disorders by emailing BEBRF at

Please also include a picture of yourself to accompany your story. By submitting a story, you acknowledge that you understand and agree that your story and the picture may be published on this website, on the BEBRF Facebook page, or in the Newsletter if it is selected for use. BEBRF reserves the right to edit your story for content and space.

Also, if you love our work then tell the world! Stories about us from people like you will help us make an even bigger impact in our community. Won’t you help us raise visibility for our work by posting a brief story of your experience with us? All content will be visible to potential donors and volunteers. It’s easy and only takes 3 minutes! Go here to get started!

If you would like to learn about other people’s experiences with blepharospasm, visit the Patient Stories section of this website.

Advocate with us

Each year, volunteers from BEBRF join the Dystonia Advocacy Network (“DAN”) in Washington DC to educate Members of Congress about dystonia and how it changes lives.

Dystonia advocates develop relationships with their legislative leaders to help them understand the challenges of those living with dystonia. The DAN continuously works to adopt and advance a legislative agenda that raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves research forward. Your voice is needed to help find the cure for dystonia.

Group of people posing for a photo, woman in the middle is holding a award chart

The DAN welcomes and represents individuals with all forms of dystonia, and is led by the following dystonia organizations:

  • Benign Essential Blepharospasm Research Foundation (BEBRF)
  • Dystonia Medical Research Foundation (DMRF)
  • National Spasmodic Dysphonia Association (NSDA)
  • National Spasmodic Torticollis Association (NSTA)
Ena and Wilmot at capitol

How can I help?

If you are interested in joining us in DC, each year, or helping us to call/send emails as issues arise to our Congress members, please contact the office for more information.

Also, make sure we have your email on file to receive alerts when important issues arise that we need your help to bring attention to.

Volunteers from BEBRF joined Advocacy Network in Washington DC

Want to fundraise for BEBRF?

You can help BEBRF raise money by creating your own fundraiser. Some ideas for that include:

Things to keep in mind:

  • BEBRF does not provide reimbursements for any expenses on fundraising events that you hold.
  • If you plan an event, you are responsible for all of the organizing. We can offer guidance, but can not plan it for you.