Speaker Series: Symposium Recap With Neuromuscular Fellow

Dr. Aaron Zelikovich. Is a neuromuscular physician who trained at the University of Pennsylvania under Dr. Sean Byrd, Dr. Chafic Karam, and others. His background began in research on spinal muscular atrophy (SMA), and over time it shifted to adult neuromuscular care, especially Guillain-Barré syndrome (GBS) and CIDP. His passion is helping patients walk longer, reduce pain, and improve quality of life

I started in oncology research but found no passion there. An opportunity in a neuromuscular lab working on SMA changed everything. I shadowed my mentor, Dr. Nancy Koontz, in a muscular dystrophy clinic and realized this was my calling. Working on clinical trials that changed outcomes for children with SMA inspired me to pursue neuromuscular medicine.

During fellowship, I encountered a patient who had GBS years before being diagnosed with CIDP. I asked if that history increased risk, but there was little data. With Dr. Karam and colleagues, I helped build a Penn CIDP database. Dr. Karam encouraged me to apply for a Foundation grant, which opened the door to my involvement.

I expected a typical science-heavy meeting like the MDA conference. Instead, this symposium balanced science with patient advocacy, mental health, and holistic care. It exceeded all expectations and reminded me why I do this work—because of the human side of medicine.

Hearing stories of “invisible struggles” was eye-opening. For example, one patient described needing to plan an entire trip to a football game around rest and accessibility, despite “looking normal.” It reminded me that clinic visits often miss the lived experience. That humility will shape how I care for patients.

• Dr. Khella emphasized self-care and recognizing pain beyond acute disease.
• Patients shared how knowing their “typical” pain helped detect other issues, like one man whose different pain led to discovering a spinal compression.
• The panel also highlighted therapies beyond medication—physical therapy, counseling, massage, acupuncture—underscoring the need for a toolkit approach.

This remains an open research question. We lack biomarkers to predict who will transition. Clinically, it’s hard to distinguish acute GBS from early CIDP. I’m hopeful future research will develop tests to help answer this.

• New immune-mediated therapies are promising, but what really inspired me was the Evidence of Disease Activity (EDA) scale project. At Penn, we tested the scale in real-world patient records.
• While not perfect, it represents real progress in communication and patient-centered care.

• The Leadership Collaborative is a patient-driven initiative where people living with GBS, CIDP, and MMN worked alongside doctors and researchers to define the patient journey in clearer, more accurate terms.
• One major outcome is the Evidence of Disease Activity (EDA) scale, a tool created with patient input to better describe remission, relapse, and ongoing symptoms.
• This matters because it bridges the gap between patient experiences and medical language, helping doctors and patients communicate more effectively and plan treatment together.

Fatigue is complex and often underappreciated. It may stem from nerve dysfunction, mental health, or lifestyle factors. Unlike pain, we lack diagnostic tests or clear treatments. Addressing fatigue requires a holistic approach that considers physical, mental, and environmental influences.

• Patient Story (Charisma): Her photos and journey illustrated resilience and reframing life from “what can’t I do” to “what can I do.”
• Wellness Sessions: The Zen hallway modeled simple practices for self-care that patients could take home.

• Understand that not every neurologist is comfortable with CIDP/GBS. If you can, find someone you trust.
• Don’t be afraid to speak up about symptoms, even if you think they’re small.
• Advocate for yourself respectfully—most physicians will respond positively.

• The Foundation truly centers patients and research.
• You’re not alone—community and shared experiences matter.
• The world’s leading experts and patients come together here, making it unique.

Thankful. The experience gave me empathy, a network of peers, and renewed passion.

By supporting local events in New York, referring patients to the Foundation for resources, continuing collaborative research, and staying connected to the GBS, CIDP and MMN community.

• Community matters – Being in a room full of people with GBS, CIDP, and MMN showed me that no one has to face this alone.
• Patient voices led the way – Stories and experiences shaped research discussions, new tools, and care strategies.
• Pain and fatigue were front and center – sessions highlighted how these lasting symptoms affect daily life and how to manage them.
• Research is moving forward – updates on immune therapies and the new EDA scale give hope for clearer treatment paths.
• The focus was holistic – the symposium balanced science, wellness, and emotional support in caring for the whole person.