Our impact over the years
Since 1981 BEBRF has awarded almost $3 million in Research Grants. One study resulted in botulinum toxin being approved for treatment, and it remains the most effective form of treatment for our patients as well as other dystonia patients.
BEBRF maintains a patient database with currently over 4,000 patients and caregivers in our community and is provided with education and resources. We continue to grow each year.
BEBRF volunteers typically hold over fifty support group meetings a year in the US. We offer these meetings both in-person and virtually via Zoom.
Over 100 people attend the annual BEBRF Symposium to learn more about blepharospasm. Attendance is international.
BEBRF staff spends an average of 8 – 10 hours a week, counseling patients and caregivers on ways to cope with their blepharospasm.
In 2020, BEBRF implemented online Zoom support group meetings to continue offering support to patients during the pandemic and reach those who can’t typically attend meetings in person. This will continue to keep supporting those in need and has also opened up offering support group meetings to those outside the US.
BEBRF hosts online webinars every few months to continue to provide more education to patients and caregivers.
In order to raise awareness in front-line eye-care providers about the existence of this rare condition, and to provide other specialists with information regarding the many services we offer blepharospasm patients, we attend medical academy meetings annually.
Externally. We are members of other dystonia organizations like Dystonia Advocacy Network and the Dystonia Coalition. We continue to participate in the Global Dystonia Registry and the Dystonia Brain Collective asking our constituents to consider enrolling in either or both to help find a cure.