From The Executive Director

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.

Newsletter suggested donation $20.00 USD NEWSLETTER DEADLINE DATES

COPY DUE DATE

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

Cranial Dystonia Doctors BEBRF has a very good database of doctors who treat blepharospasm, and we are seeking to enhance it with doctors who also treat cranial dystonia (also referred to as Meige). If you have cranial dystonia and are getting good medical treatment, please email or call me at the address/phone number above so that we can note the doctor in our database.

Upcoming Webinar Many blepharospasm patients call the BEBRF office for advice. My BEBRF colleague Angel Roberts and I have put together a program called How to Get the Most Out of Your Injections We will be presenting this Webinar in June. Check the BEBRF website and Facebook page for more details as they are posted.

Mid-Year Appeal The Mid-Year Appeal is underway. Please consider making a donation. We hope to recognize all of our 2021 donors publically in the next Newsletter. Please be sure to respond to our requests for permission to list your name.

BEBRF attends the NANOS Academy BEBRF attended the North American Neuro-Ophthalmologists Society (NANOS) Annual Academy in Austin, TX in February. In addition, we will also attend the American Academy of Optometry in San Diego in October. The purpose for this attendance is to ensure as many medical professionals as possible are aware of BEB, which will lead to earlier diagnosis and earlier treatment. In addition, the BEBRF presence at these academies provides the opportunity to give the treating doctors the patients’ perspective on their BEB care. The picture below shows Dr. Jane Boyd and me as we represented BEBRF at the NANOS Academy.

BEBRF BOARD OF DIRECTORS

Heidi Coggeshall, President/Treasurer* Tishana Cundiff, Vice President Education & Support* Peter Bakalor, Vice President- Development* Jane Boyd, MD, Vice President- Physician Outreach* Charlene Hudgins, Executive Director/Secretary Cynthia Clark* Robert Campbell, PhD* Jonathan Healy Carlas Powell* Bryan Renehan*

EX OFFICIO

Mark Hallett, MD, Advisor

*Patients

MEDICAL ADVISORY BOARD

Mark Hallett, MD, Chief, Human Motor Control Section, NINDS, NIH, Bethesda, MD Brian Berman, MD, Richmond, VA Andrew Harrison, MD, Minneapolis, MN Joseph Jankovic, MD, Houston, TX Hyder A. “Buz” Jinnah, MD, PhD, Atlanta, GA Laurie Ozelius, PhD, Boston, MA Sarah Pirio Richardson, MD, Albuquerque, NM Charles Soparkar, MD, PhD, Houston, TX Mark Stacy, MD, Greenville, NC Julie Woodward, MD, Durham, NC

DISTRICT DIRECTORS & EMAIL

Bryan Renehan, Eastern

CT, DE, DC, FL, GA, MA, MD,

ME, NH, NJ, NY, NC, PA, PR,

RI, SC, VT, VA, WV dir-e@blepharospasm.org Tishana Cundiff, Central

AL, AR, IL, IN, IA, KS, KY, LA,

MI, MN, MS, MO, ND, OH, SD,

TN, TX, WI dir-c@blepharospasm.org Cynthia Clark, Western

AK, AZ, CA, CO, HI, ID, MT,

NE, NV, NM, OK, OR, UT,

WA, WY dir-w@blepharospasm.org