BENIGN ESSENTIAL BLEPHAROSPASM RESEARCH FOUNDATION INC

BEBRF’s goals are – 1. RESEARCH to find a cure, 2. SUPPORT because we care, and 3. EDUCATION to enlighten.
In pursuit of these goals, BEBRF has established a three-part program:
• Sponsorship of Research - a commitment to raising monies through charitable donations to be directed toward the research required to discover the cause, treatments, and cure for blepharospasm, Meige, and other related disorders of the facial musculature.
• Patient Support - provided through a network of support groups in all parts of the country and internationally, that brings patients together to share experiences, receive encouragement and get direction to centers for treatment. Support is also provided by the office staff and BEBRF’s programs and publications.
• Information and Education - designed to create an awareness of blepharospasm, Meige, hemifacial spasm and other related disorders of the facial musculature in the medical community and the general public and to promote distribution of information and enhancement of continuing medical education regarding these disorders.

BEBRF follows many strategies to accomplish the goals listed above. By category, those strategies include:

RESEARCH. BEBRF has an annual research granting program. These grant applications are received from all over the world and are evaluated by a Medical Advisory Board (MAB) comprised of some of the top doctors in their fields related to research and treatment of blepharospasm. Dr. Mark Hallett of the National Institutes of Health chairs the MAB. BEBRF also enters into partnership research projects with organizations like Dystonia Medical Research Foundation and the Dystonia Coalition Project. BEBRF also underwrites funded research articles. Finally, BEBRF facilitates clinical trials for various research projects relating to blepharospasm and other disorders.

EDUCATION. The many strategies of educating patients, physicians, and the general public include: a quarterly, scholarly Newsletter, an Annual Symposium in a different city each year in which 6-8 expert doctors give presentations of the latest information on a variety of topics related to blepharospasm; the creation of patient education brochures on many different topics; attending annual medical Academies to disseminate education to physicians about blepharospasm and the latest medical developments; the creation of New Patient Packets for the newly diagnosed and Social Security Disability Packets for patients who find they can no longer work; the maintenance and updating of a Website with hundreds of articles and Videos on various topics related to blepharospasm; and maintaining a library of extensive educational materials for patients, physicians, and the general public.

SUPPORT. BEBRF strategies for providing support for patients include: a nationwide network of Support Group Meetings led by well-trained volunteers who are also blepharospasm patients; an office staff which maintains all of the educational materials, provides physician referrals to patients, and sometimes counsels patients on coping with their disorder; the aforementioned Newsletter and Website also provide support by the “Ask the Doctor” and “Patient Stories” sections of the Newsletter and the question and answer Bulletin Board section of the Website which a Registered Nurse curates. In addition, BEBRF has recently updated their Facebook page to provide more welcoming support and information on that form of social media.

There are many factors that contribute to BEBRF’s ability to carry out its goals. First, BEBRF is nearly 40 years old, which speaks of its longevity. Many organizations will last only as long as the founder is directly involved, but BEBRF has successfully transitioned to professional management and hired Charlene Hudgins as Executive Director. Ms. Hudgins, who has a BA from McNeese State University and MA from University of Arkansas, brings 35 years of non-profit management experience to BEBRF. In 2018, BEBRF hired Angel Roberts, who has a BS in graphic design from Full Sail University, as the administrative assistant. Both Hudgins and Roberts provide a stable foundation for the administration of BEBRF as well as new ideas and skills. Both also work very well with blepharospasm patients, volunteers, and doctors who form the BEBRF constituency.

In addition to the staff, BEBRF has a nationwide army of committed volunteers who act as a strong support system for the Foundation’s Support Groups. The volunteers who serve on the Board of Directors (many of whom are blepharospasm patients themselves) are very active and engaged in their service contributions to BEBRF. Research proposals are awarded based on the findings of the Medical Advisory Board, which is made up of 11 top doctors in their field who volunteer their time to review and discuss the grant proposals.

BEBRF has invested in Neon, a non-profit database which keeps records of blepharospasm patients, doctors who treat them, donors, and pharmaceutical representatives. BEBRF has been fortunate to secure close relationships with those pharmaceutical companies. In addition, BEBRF has, over its history, created financial stability through wise investment of its assets so that it has the means to award research grants.

Many of the accomplishments are listed above in the indicators of success. Also noteworthy: BEBRF has funded nearly $3 million in research in its history. These research projects are narrowing in on the cause, cure, and treatments for blepharospasm and its related disorders.

BEBRF also has plans to achieve the following in the future:
• Update the current Website to make it more user friendly,
• Working with an intern, BEBRF would like to increase the number of physicians who treat blepharospasm in their Neon database,
• Continue with the contemplated 3-tiered survey in gathering patient information that will be useful to statisticians and researchers,
• Digitize all research and Newsletter articles into a working catalogue of information which could be shared with patients, physicians, and attendees at medical Academies,
• Increase the number of medical Academies attended on an annual basis,
• Address patient transportation issues (many cannot drive) for getting to both Support Group Meetings and medical appointments,
• Explore the use of modern technology to create remote attendance possibilities for Support Group Meetings,
• Incorporate live Facebook broadcasts on a regular basis,
• Provide a way for the MAB to have face-to-face meetings; currently the meetings are held via teleconference,
• Find a way for Support Group volunteers to have an annual meeting,
• BEBRF would like to increase their grant income for special projects, capacity building, operating expenses, and research, and
• In general, continue to create more awareness of blepharospasm and its related disorders.