Tell your story
Share the story of your journey with blepharospasm and its related disorders by emailing BEBRF at firstname.lastname@example.org.
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.
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.
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)
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.
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.