The Benign Essential Blepharospasm Research Foundation (BEBRF) is a nonprofit, 501 (c) (3) organization founded in 1981 by Mattie Lou Koster, a blepharospasm patient. Blepharospasm (BEB) means eyelid spasm. The eyelids unpredictably and involuntarily clamp shut in both eyes, leaving the victim functionally blind until the spasm ceases in a few seconds or a few minutes. Cranial dystonia (Meige) is a similar condition in which involuntary muscle spasms in the lower face and jaw cause grimacing and jaw movements. Blepharospasm and cranial dystonia (Meige) are classified as movement disorders and are described as focal dystonias. Hemifacial spasm generally begins as an involuntary contraction around one eye that gradually progresses down one side of the face to the cheek, mouth, and neck. It is not a form of dystonia. BEBRF is a member of the National Organization For Rare Disorders (NORD), American Brain Coalition,Dystonia Advocacy Network, Dystonia Coalition ORDR, and The Harvard Brain Tissue Resource Center (Laurie Ozelius, PhD is the BEBRF Representative). Benign Essential Blepharospasm Research Foundation 755 S. 11th St, Ste 211 Beaumont TX, 77701 P.O. Box 12468 Beaumont, Texas 77726-2468 Phone: 409-832-0788 Fax: 409-832-0890 E-mail: bebrf@blepharospasm.org Web site: www.blepharospasm.org Contributions may be sent to: BEBRF P.O. Box 12468 Beaumont, Texas 77726-2468 The Editorial Staff reserves the right to edit any and all articles. It is our editorial policy to report on developments regarding blepharospasm, cranial dystonia and hemifacial spasm, but we do not endorse any of the drugs or treatments in the Newsletter. We urge you to consult with your own physician about the procedures mentioned. The Blepharospasm Newsletter is published quarterly and mailed to patients, families, doctors, friends of the Foundation, and health care providers around the world.
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NEWSLETTER DEADLINE DATES ISSUE
Summer Fall
COPY DUE DATE
July 1, 2022 October 1, 2022
FROM THE
EXECUTIVE DIRECTOR
The 2022 BEBRF Symposium is set for Oct. 21 & 22 at the Hilton Phoenix Airport Hotel in Phoenix, AZ, with Dr. Padma Mahant as program director. See more information on page 4 and pages 8 – 9. We hope to see you in Phoenix! Support Group Meetings are still available through Zoom. Check the BEBRF Website or Facebook page for the upcoming ones. We hope to return to in-person support group meetings in the future. Zoom meetings will also continue into the future. Advocacy BEBRF is again participating in the Dystonia Advocacy Network’s annual Advocacy for Dystonia. In addition to advocating in March for support for budgets for the NIH and the Department of Defense Peer Reviewed Medical Research Program, we will also be advocating for two very important blepharospasm treatment issues later this year. Contact me at charlene@blepharospasm.org or 409-832-0788 if you would be interested in reaching out to your congressperson and/or senators on behalf of the blepharospasm community. CONTINUED ON NEXT PAGE
PROTECTING PATIENT INFORMATION: The Benign Essential Blepharospasm Research Foundation respects the privacy of patients. Patient information is not shared outside the BEBRF organization.
TABLE OF CONTENTS Comparison of Botulinum Toxins . . . . . . . . . . . . . . . . . . . . . . 1 From The Executive Director. . . . . . . . . . . . . . . . . . . . . . . . . . 2 The 2022 BEBRF Symposium Is On!. . . . . . . . . . . . . . . . . . . . 4 Medical Marijuana for Blepharospasm . . . . . . . . . . . . . . . . . . 5 Easy Way You Can Fundraise . . . . . . . . . . . . . . . . . . . . . . . . . 6 Coping With Dry Eyes And Photophobia . . . . . . . . . . . . . . . . 7 2022 BEBRF Phoenix Symposium Speaker Bios. . . . . . . . . . 8 BEBRF 2022 Phoenix Symposium Schedule . . . . . . . . . . . . . 9 BEBRF 2021 Symposium 1st Q&A Session . . . . . . . . . . . . . 10 BEBRF 2021 Symposium 2nd Q&A Session. . . . . . . . . . . . . 12 Support Group Meetings & Photos. . . . . . . . . . . . . . . . . . . . 13 BEBRF Has Fundraising Merchandise . . . . . . . . . . . . . . . . . 16 2
The opinions expressed in the articles in this newsletter are those of the authors and do not necessarily reflect the views of the BEBRF, publisher of the BEBRF newsletter.
