BEBRF

Northeast Texas November
2021-11-15 11:00 - 13:00 UTC | Zoom
Please contact Linda for invitation instructions to the meeting.
Contact: Linda Trahan
Tel: 214-563-7937
Email: linda.trahan@sbcglobal.net

Participate in a Clinical Trial!
2021-11-01 - 2022-01-31
The drug company ADDEX together with Dr. Buz Jinnah of Emory University (who serves on our MAB and the Medical and Scientific Advisory Council for DMRF) is launching a trial of a new class of medications known as allosteric modulators. The name of the drug they will use is dipraglurant. It is being studied for possible use with Parkinson’s disease and dystonias.
The study will be a small pilot trial of about 15 patients. The patients will take oral medication and then stay at Emory University for several hours of observation, followed by a second dose. The next day, a third dose will be given. So, participation would require 2 days at Emory University in Atlanta.
If you are interested in participating in this research, please contact Cameron Injoo for further information: cameron.injoo.yeo@emory.edu

Cancelled
2021-10-27 13:30 - 15:30 UTC | Zoom
Please contact Sharon for invitation instructions to the meeting.
Contact: Sharon West
Tel: 817-297-4389
Email: swest124@swbell.net

You Can Participate in Research!
2021-10-27 - 2021-11-16
WE NEED YOUR HELP! Earlier this year several BEBRF patients participated in focus groups for a Patient-Centered Outcome (PCO) research project developing a phone app that will track the efficacy of botulinum toxin injections from injection cycle to injection cycle. The project has been created by Drs. Sarah Pirio Richardson (University of New Mexico) and Brian Berman (Virginia Commonwealth University), both on the BEBRF Medical Advisory Board. This project is funded by the Dystonia Coalition. They are ready to move on to the next phase of the project, and you can help.
They are currently collecting data from patients with blepharospasm and now want to hear from YOU!
The Goal: To gather data that will be essential for developing future novel treatments for dystonia.
How they are doing it: By learning more about the symptoms and activities that can be troublesome for people with blepharospasm, understanding which aspects of this condition are most relevant to you, and identifying which aspects of this condition you would most want to see a treatment for.
How you can help: By filling out this survey! As they develop tools to gather this information, feedback from patients like you is essential.
Click here for survey

Dallas, TX
2021-10-19 12:00 - 14:00 UTC | Zoom
Please contact Ena for invitation instructions to the meeting.
Speaker: Dr. Elizabeth Peckham
Contact Person: Ena Wilmot
Phone: 817-488-0445
Email: enamwa@hotmail.com

Presentations from the 2021 Symposium
2021-10-12 08:00 - 17:00 UTC
The PowerPoint decks from presentations made at the 2021 BEBRF Symposium in Philadelphia are now available online:
Symposium PowerPoints

Ridgeway, VA
2021-09-25 12:30 - 14:30 UTC | Clarence’s Steak & Seafood House, 6636 Greensboro Rd, Ridgeway, VA, 24148, United States
Location:
Clarence’s Steak & Seafood House
6636 Greensboro Rd
Ridgeway, VA 24148
Contact Person: Peggy Gilley
Phone: 276-956-3555

Los Angeles, CA
2021-09-16 13:30 - 15:30 UTC | Zoom
Please contact Cynthia for invitation instructions to the meeting.
There are two different time options for a meeting this day.
Contact Person: Cynthia Clark
Phone: 650-678-4132
Email: clark.cyl@gmail.com

San Diego, CA
2021-09-15 13:00 - 15:00 UTC | Zoom
Please contact Joanne for invitation instructions to the meeting.
Contact Person: Joanne Matuzas
Phone: 858-395-4609
Email: jmatuzas@aol.com

National Support Meeting
2021-09-10 13:00 - 15:00 (America/Chicago) | Zoom
Please contact Charlene for invitation instructions to the meeting.
Contact Person: Charlene Hudgins
Phone: 409-832-0788
Email: charlene@blepharospasm.org

UK Support Meeting
2021-08-23 13:00 - 15:00 UTC | Zoom

Northeast Texas
2021-08-09 11:00 - 13:00 UTC | Zoom

Dallas/Fort Worth, TX Support Meeting
2021-06-30 13:30 - 15:30 UTC | Zoom

Dallas, TX Support Meeting
2021-06-22 12:00 - 14:00 UTC | Zoom
Please contact Ena for invitation instructions to the meeting.
Contact: Ena Wilmot
Tel: 817-488-0445
Email: enamwa@hotmail.com
