Benign Essential Blepharospasm Research Foundation

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

📞 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.

📞 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.

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.

Sign the Petition Reverse the Medicare Decision on Botulinum Toxin for Blepharospasm