Visit our Facebook Page
The BEBRF Facebook page is a wonderful resource for those that like to use Facebook. If you “Like” and “Follow” our page, you will get notified when we add new Support Group Meetings and other events directly in your feed. We also share helpful hints, ways to talk to your doctor, articles from newsletters, ways to get involved to spread awareness or advocate, updates on research going on, and even clinical trials that become available to you.
Facebook is also an easy way for you to help fundraise on behalf of BEBRF through Facebook fundraisers for your birthday, or even if you are planning on joining a walk/run on behalf of BEBRF. For example, the LA Marathon that a patient’s family member did in 2019 in support of BEBRF where we were able to raise over $2,500.
Other Useful Links
These links to other Internet resources are included for your information on the basis that they may be of interest to persons with BEB/Meige. BEBRF has no control over the content of these sites and thus the information contained in them may not reflect the opinion of BEBRF or current medical opinion. It is strongly urged that patients do not change treatment without first consulting their physician.
Societies & Organizations
- American Academy of Ophthalmology
- American Academy of Neurology
- American Brain Coalition
- BEB Canadian Research Foundation
- Blepharospasm Australia
- Dystonia Advocacy Network
- Dystonia Medical Research Foundation
- Dystonia Europe
- Movement Disorder Society
Health & Drug Information
- Medical Library Association
- Medscape Drug Interaction Checker
- Lab Tests Online
- Merck Manual of Health Information
Social Security & Disability Information
The Benign Essential Blepharospasm Research Foundation frequently receives inquiries from patients regarding information and support to apply for disability benefits with Social Security. To this end, BEBRF assembled these materials to assist in pursuing these benefits as efficiently as possible, equipping you with appropriate expectations and information.
The degree to which blepharospasm is disabling varies with the individual. Symptoms may or may not get worse with time and treatments may or may not continue to be effective. Some patients become so impaired by blepharospasm or other dystonia symptoms that they are unable to continue working productively and may qualify for special disability benefits under the Social Security program.
BEBRF has a packet of materials available at no charge for patients who are considering filing for disability under the Social Security Act. Below is a link to this material.