Benign Essential Blepharospasm Research Foundation

27/05/2026

🚨 NEW BEBRF VIDEO AVAILABLE🚨

What if one of the biggest barriers to better treatments for blepharospasm and dystonia isn’t the treatment itself—but how we measure whether it works?

Outcome Measures for Research
David A. Peterson, PhD
2025 Program Director, BEBRF Annual Symposium
Associate Research Scientist, UC San Diego Institute for Neural Computation; Director, Computational Neurology Center (UC San Diego)

Dr. Peterson’s work focuses on computational neuroscience and machine learning approaches to movement disorders, with an emphasis on improving how blepharospasm and dystonia are objectively measured in research and clinical care.

This presentation explores how outcomes are currently measured in clinical studies - and why that process plays a critical role in how new treatments are evaluated and developed.

Topics include:
• Clinical rating scales used in trials
• Patient-reported outcome measures
• Emerging tools such as video analysis, EMG, and digital approaches

At the core is a simple idea: better measurement leads to better science - and ultimately better treatments.

🎥 Watch here:
👉 https://youtu.be/s5VgdLBKj08

Outcome Measures for Research: David Peterson, Phd presenting live from 2025 BEBRF Annual Symposium at Sheraton Mission Vailley San Diego, San Diego, CA, US...

20/05/2026

Have you ever had a moment where you thought: “Only someone with blepharospasm would really understand this.”

We’re inviting creative storytellers and performers in the community to take part in a live storytelling/open mic event on Zoom we are beginning to develop.

We’re not looking for medical stories or personal histories of diagnosis or treatment. We’re looking for creative pieces inspired by lived experience — stories, reflections, observations, and everyday moments that capture how you see and move through the world.

This can be thoughtful, poetic, reflective, or unexpectedly light in tone. What matters most is originality and your unique perspective.

No formal performance experience or writing background is needed — just your voice and your willingness to share it.

If you’ve ever thought, “I could turn this into something people would want to hear,” we want to hear from you.

Interested in performing or learning more?

Email: [email protected]
Call: 409-832-0788

13/05/2026

As the Medicare public comment period comes to a close on May 16, we wanted to send one simple follow-up reminder.

We know our advocacy outreach has been more active than usual in recent weeks. BEBRF does not typically send messages this frequently, but this issue is simply too important not to keep our community informed and engaged. We did not want anyone to miss the opportunity to participate before the deadline.

Did You…?

✔ Sign the petition?: http://bit.ly/4dabOM8
✔ Add a personal comment, story, or short video message?
✔ Share the petition with 2- 3 friends or family members?
✔ Contact your U.S. Senators? https://www.senate.gov/senators/
✔ Contact your U.S. Representative? https://www.house.gov/representatives/find-your-representative

Every action helps reinforce the importance of protecting access to individualized blepharospasm treatment and physician-directed care.

Thank you for continuing to stand with the blepharospasm community during this important moment.

Please Note: Signing, commenting on, and sharing the petition is completely free.

During the signing process, Change.org may offer supporters the option to make a contribution to help promote the petition on its platform.

Those contributions go directly to Change.org and not to BEBRF.

If you would like to support BEBRF directly, you can do so by clicking here: https://bebrf.app.neoncrm.com/forms/3

08/05/2026

📞 STEP 3: CALL YOUR REPRESENTATIVE

We’ve already:

✔ STEP 1: Signed the petition
✔ STEP 2: Called our Senators

Now it’s time for STEP 3 - contacting our U.S. Representatives.

When Congressional offices start getting repeated calls on the same issue, it gets attention fast. We need them to hear us NOW about protecting Medicare access to botulinum toxin treatment for blepharospasm.

⏳ The open comment deadline is May 16.
Please make your call today.

👉 Go to: https://www.house.gov/representatives/find-your-representative
👉 In the UPPER RIGHT CORNER, enter your ZIP code
👉 Your Representative’s name will appear
👉 Click on their name
👉 On their website, click “Contact”
👉 CALL THEIR OFFICE 📞

Short script:
“Hi, my name is ____. I’m calling to ask the Representative to oppose proposed Medicare changes that could limit access to botulinum toxin treatment for blepharospasm. This treatment is medically necessary, and patients depend on it. Please protect coverage.”

Simple. Fast. Important.

📢 Every call matters - let’s keep the momentum going.

05/05/2026

📞 Call Your Senators - It Takes 2 Minutes 📞

We’ve signed petitions. We’ve sent emails. We’ve spoken up.

Now let’s do something that’s harder to ignore: make the call.

When offices start getting repeated calls on the same issue, it gets attention—fast. This is how we make sure our voices are heard on Medicare access to botulinum toxin treatment for blepharospasm.

👉 https://www.senate.gov/senators/senators-contact.htm
👉 Select your state (upper left corner - just 2 clicks)
👉 Call your Senators and share your story

Not sure what to say? Try this:
“Hi, my name is ____. I’m calling to ask the Senator to oppose the proposed Medicare changes that would limit access to botulinum toxin treatment for blepharospasm. This treatment is medically necessary and losing access would seriously impact patients. Please protect coverage for it.”

That’s it. Quick. Personal. Powerful.

📢 Let’s keep their phones ringing. Call today.

04/05/2026

Dr. Mehmet Oz, Center for Medicare and Medicaid Services,
Senate Finance Committee, Ways and Means Committee, Energy and Commerce Committee:

Proposed Medicare coverage changes currently under review could affect access to medically necessary botulinum toxin treatment for people living with blepharospasm.

For many patients, this treatment is essential for maintaining functional vision and daily independence.

If finalized as drafted, these changes may reduce individualized care and, in some cases, limit treatment options.

🕒 Please take 2 minutes to add your name:
https://www.change.org/p/stop-medicare-changes-that-could-leave-blepharospasm-patients-functionally-blind

Signing is free. Change.org may suggest optional contributions to help support or amplify the petition, but you can skip them if you prefer.

Every signature, share, and comment helps while this policy is still being shaped during the active CMS public comment period.

We ask our community and partner organizations in the dystonia and movement disorder space to stand with us:

-Dystonia Medical Research Foundation
-Dysphonia International
-National Spasmodic Torticollis Association
-Dry Eye Foundation
-Rare Diseases Clinical Research Network (including the Dystonia Coalition)

Stop Medicare Changes That Could Leave Blepharospasm Patients Functionally Blind

01/05/2026

📊 Treatment Survey - Your Experience with Access and Medicare

We’re collecting patient input on experiences with treatment access under Medicare.

👉 Take 2 minutes to share your experience: https://app.polling.com/forms/21dc8ee3-27fb-44b9-9895-fe3e0e6fc3a9/share

Your responses help us better understand real-world access and coverage experiences.

Thank you for sharing your perspective.

Share your opinion by completing this survey on Polling.com.

30/04/2026

👀 You saw the clues…did you get it right?

Blues. BBQ. The Music Gates at Graceland 🎶

Some of you were close… a few of you nailed it.

📍 2026 BEBRF Annual Symposium → Memphis, Tennessee

📅 November 13–14, 2026
📌 Full details coming soon

Did YOU guess Memphis?

Let us know if you got it right 👇

28/04/2026

This is important for anyone affected by blepharospasm or who cares about access to treatment.

Proposed Medicare changes could seriously limit how botulinum toxin injections are given — even though this treatment is what allows many of us to see and function day to day.

We need people to speak up.

👉 Please sign the petition
👉 Please share it
👉 And after you sign, when prompted, please choose to leave a comment and share your story

Sign here: 👉 https://www.change.org/p/reverse-the-medicare-decision-on-botulinum-toxin-for-blepharospasm

Every story helps show the real impact to decision makers. Every signature and share matters.

Reverse the Medicare Decision on Botulinum Toxin for Blepharospasm