University of Rochester Batten Center

University of Rochester Batten Center The University of Rochester Batten Center (URBC) provides accurate diagnosis and clinical management of all forms of Batten disease. Education.
5.

We help to provide a better understanding of this devastating disease through ongoing research and development. Batten Disease is a rare neurodegenerative syndrome that erupts with little warning. It first steals sight, then cripples cognitive and motor capacities, and while different variations of the disease bring a different age of onset and progression, it is, ultimately, terminal. The most co

mmon form is juvenile, in which symptoms begin between 5 and 8 years of age. There are between 500 and 1,000 people with Batten Disease in the United States and only a few thousand in the world. The Batten Center at the University of Rochester has the following core components and objectives:

1. Genetic diagnosis of Batten disease.
2. Clinical evaluation of Batten disease.
3. Continued development of the UBDRS, a clinical rating scale for Batten disease
4. Interaction with current research into Batten disease.
6. Development and design of clinical trials for JNCL.

07/06/2026

🩵 Meet Amy Vierhile!

Amy Vierhile is a Nurse Practitioner at the University of Rochester Batten Center and has been caring for individuals and families affected by Batten disease for more than 20 years.

For many families, Amy is the very first point of contact at URBC. Whether you're looking for information about Batten disease, scheduling a visit, or exploring research opportunities, she's often the friendly voice and helping hand that guides families every step of the way.

Watch her video to learn more about Amy, her role at URBC, and what she's looking forward to at this year's BDSRA Family Conference. Be sure to say hello if you see her July 9–11—she loves getting to know Batten families and helping connect them with the care and resources they need!

07/03/2026

🩵 Meet Dr. Alex Levin!

We're excited to introduce Dr. Alex Levin, an ocular geneticist who specializes in caring for individuals with Batten disease and other inherited eye conditions.

As a key member of the University of Rochester Batten Center team, Dr. Levin provides expert eye care for children and adults with Batten disease. His expertise is an important part of both our multidisciplinary clinical care and our natural history studies.

Watch his video to learn more about Dr. Levin, why he love working with Batten families, and his role in leading the way to therapies for maintaining vision in CLN3 disease!

06/30/2026

🩵 Meet Dr. Erin Bojanek!

Dr. Erin Bojanek is a postdoctoral fellow in Psychology at the University of Rochester who has been working with Batten disease families for several years through her research program.

Her work focuses on using electroencephalography (EEG)—a safe, non-invasive way to measure brain activity—to identify brain biomarkers that may help researchers better track disease progression and measure the effects of future treatments.

Watch her video to learn more about Erin, her research, and what she's looking forward to at this year's BDSRA Family Conference. If you're interested in learning more about EEG research, be sure to stop by and say hello!

06/29/2026

🩵 Meet Jenny Pushner!

Jenny is a medical student at the University of Rochester who is spending her summer at the University of Rochester Batten Center learning about Batten disease and contributing to research.

This summer, she's working on a project focused on understanding changes in walking and gait in children with CLN2 and CLN3 disease. By studying how movement changes over time, Jenny hopes to help advance research that will improve the way we measure disease progression and evaluate future treatments.

Watch her video to learn more about Jenny and what inspired her to get involved in Batten disease research!

06/24/2026

🩵 Meet Naomi Taggart!

Naomi is a Clinical Research Coordinator at the University of Rochester Batten Center and has worked closely with Batten disease families through multiple natural history studies over the years.

Although Naomi won't be able to join us at this year's BDSRA Family Conference, she wanted to take a moment to introduce herself and share her appreciation for the Batten community. Her work helps support the research efforts that are advancing our understanding of Batten disease and preparing us for future therapies.

Watch her video to learn more about Naomi and her role at URBC. While she'll miss seeing everyone in person this year, she looks forward to connecting with many families at future study visits and research opportunities.

06/22/2026

🩵 Meet Dr. Lauren Halladay!

We're excited to introduce Dr. Lauren Halladay, a psychologist at the University of Rochester who specializes in working with children with neurodevelopmental disabilities and their families.

This year will be Dr. Halladay's first BDSRA Family Conference, and she's looking forward to meeting families, learning from the Batten community, and contributing to the important work being done to better understand and support individuals living with Batten disease.

Watch her video to learn more about her background and what she's most excited about as she joins us for this year's conference!

We can't wait for you to meet her in person July 9–11.

06/18/2026

🐾 Meet Marianna!

As Project Manager for the newly funded Batten Disease Clinical Research Consortium (BDCRC) Natural History Study and one of our dedicated URBC study coordinators, Marianna helps make research participation possible for Batten families across the country.

In her video, you'll learn a little about her role, what she's looking forward to at the upcoming BDSRA Family Conference, and why she may have had one of the most animal-filled childhoods we've ever heard about! 🐶🐱🐰🐹🐦

Watch to get to know Marianna and stay tuned for more introductions from our URBC team as we count down to July 9–11!

06/16/2026

🎉 Countdown to the BDSRA Family Conference! 🎉

The 2026 BDSRA Family Conference is just a few weeks away, and our team at the University of Rochester Batten Center (URBC) is excited to see many of you in July!

Over the coming weeks, we'll be sharing short videos from members of our URBC team so you can get to know the people behind our clinic and research programs before the meeting begins.

To kick things off, hear from our Director, Dr. Jen Vermilion, who shares a brief introduction and what she's most looking forward to at this year's conference.

Whether you're attending for the first time or returning to reconnect with friends and the Batten community, we can't wait to see you July 9–11!

💙 Stay tuned for more team introductions in the coming days.

The URBC is going on the road to Lincoln, Nebraska to take clinical research to YOU! Help Us Understand Movement in CLN2...
07/03/2025

The URBC is going on the road to Lincoln, Nebraska to take clinical research to YOU!

Help Us Understand Movement in CLN2 and CLN3 Disease

Researchers at the University of Rochester Batten Center (URBC) are conducting a study to learn how walking patterns may reveal subtle changes in disease progression—using the power of Artificial Intelligence (AI)! We will use a special computer program that analyzes videos to identify and track how human body parts move.

Who can participate?
• Children and young adults with CLN2 or CLN3 disease
• Able to walk with or without assistance

What does the study involve?
• One brief 30-60 minute study visit at the BDSRA Foundation Meeting
• Video recording of walking and a neurological assessment
• Home video of walking recorded after the visit

Families will receive a $50 stipend for participating.

Study PI:Jennifer Vermilion, MD
Contact: [email protected]

SIGN UP HERE: https://calendly.com/urbc

Today is International Batten Disease Awareness Day. 🧡These devastating neurodegenerative conditions challenge every asp...
06/09/2025

Today is International Batten Disease Awareness Day. 🧡

These devastating neurodegenerative conditions challenge every aspect of life—but it also reveals extraordinary strength, resilience, and love in those it touches.

The URBC remains committed to supporting research, care, and advocacy that bring hope and improve lives. Together, we will push forward for better treatments, better understanding, and a better future for those impacted by Batten disease.

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601 Elmwood Avenue
Rochester, NY
14642

Telephone

(585) 275-4762

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