MEET OUR EXPERTS -

The CACNA1A Global Research Network

The CACNA1A Foundation is proud to have the support of a diverse group of experienced academic and industry scientists and clinicians. Through collaboration, we are working to gain the insights needed to find both disease-modifying methods to cure or halt the progression of CACNA1A-related neurodevelopmental diseases and targeted therapeutics to treat specific symptoms.

Since 2022, the CACNA1A Global Research Network has met monthly through virtual network meeting calls and in-person annually at our CACNA1A Research Roundtables. These interactions have brought together experts across the spectrum of CACNA1A-related disorders, identified synergies, and launched collaborative initiatives such as the CACNA1A Data Portal, the CACNA1A Clinical Assessments Research Study (CCARS), and the CACNA1A Natural History Study/Biomarkers, CACNA1A Variant Classification, and Preclinical to Clinical Pathway working groups. 

The CACNA1A Foundation and its families are grateful to the CACNA1A Global Research Network for breaking down research silos to better the lives of our community. 

 If you are interested in joining our global network, please contact us at Science@cacna1a.org.

  • 2022 Rearch Roundtable

    Thirty-seven researchers from eight countries, 14 states, and 27 different institutions jumped at the opportunity to join our first-ever CACNA1A Research Network meeting and came to NYC for an incredible 2-day event! Afterward, Diane Lipscombe, PhD, emailed us that she believed this was a "transformative moment for the calcium ion channel field...We all believe in the importance of basic research as one of the critical elements towards finding cures and treatments for diseases. But it takes a community to connect and integrate knowledge."

    Lay Summary

  • 2023 Research Roundtable

    The success of our 2nd in-person Research Roundtable is a testament to the strength of our community and the impact we can achieve when we work together. CACNA1A Scientific Advisory Board Member Jeff Noebels, MD, PhD, accurately summarized the sentiment in the room: "We need the families to know that no one is leaving this room without re-upping their commitment to this disorder."

    Lay Summary

  • 2024 Research Roundtable

    A key takeaway of the meeting was that to achieve our mission of finding better treatments and a cure for CACNA1A-related disorders, we must continue the strong partnership between the families, the CACNA1A Foundation, and the Research Network. Families provide the information and tools to understand our disease. Researchers utilize these assets to develop and test treatments. And, the Foundation bridges these two communities, supporting and holding them together to move forward.

    Lay Summary

  • 2025 Rearch Roundtable

    In November of 2025, the CACNA1A Foundation virtually brought together more than 70 researchers and clinicians from around the world for our largest Research Roundtable to date. Scientists shared exciting progress on potential biomarkers, clinical trial readiness, and new therapeutic approaches—including gene therapies. These discussions highlighted how close the field is to meaningful clinical trials and reinforced the critical role families play in research. We are entering a hopeful and important phase for the CACNA1A community.

    Lay Summary

  • Sunanjay Bajaj, MD, UTHealth Houston

  • Kristin Barañano, MD, PhD, Johns Hopkins Medicine

  • Hourinaz Behesti, PhD, Rockefeller University

  • Kevin Bender, PhD, University of California, San Francisco

  • Nitya Beriwal, MD, The University of Chicago

  • Fikri Birey, PhD, Emory School of Medicine

  • Sylvia Boesch, MD, University Hospital Innsbruck (Austria)

  • Tobias Brunger, PhD, UTHealth Houston

  • Zameel Cader, DPhil, MRCP, Oxford Headache Center (UK)

  • Lishan Chen, PhD, Mahzi Therapeutics

  • Wendy Chung, MD, PhD, Boston Children’s Hospital, Harvard Medical School

  • Charles Cohen, PhD, BioIntervene

  • Henry Colecraft, PhD, Columbia University Irving Medical Center

  • Irene de Boer, MD, MSc, PhD, Leiden University Medical Center (Netherlands)

  • Ivy Dick, PhD, University of Maryland School of Medicine

  • Xiaofei Du, MD, University of Chicago

  • Anne Ducros, MD, PhD, University of Montpellier (France)

  • Brandon Farley, PhD, CACNA1A Foundation

  • Zofia Fleszar, MD, University of Tubingen

  • Alfred L. George, Jr., MD, Northwestern Medicine

  • Christopher Gomez, MD, PhD, University of Chicago

  • Scott Grossman, MD, NYU Grossman School of Medicine

  • Ingo Helbig, MD, Children’s Hospital of Philadelphia

  • Marina Hommersom, MSc, PhD, Radboud University Medical Center (Netherlands)

  • Elisabetta Indelicato, MD, PhD, Medical University of Innsbruck (Austria)

  • Alina Ivaniuk, MD, Mayo Clinic (FL)

  • Nichelle Jackson, PhD, Yale University

  • Joanna Jen, MD, PhD, Icahn School of Medicine at Mount Sinai

  • Jennifer Keller, MS, PT, Kennedy Krieger Institute

  • Kamran Khodakhah, PhD, Albert Einstein College of Medicine

  • Camilla Kilbane, MD, Case Western Reserve University School of Medicine

  • Hong Hyun Kim, PhD, Rosalind Franklin University

  • Sookyong Koh, MD, PhD, University of Nebraska Medical Center

  • Audra Kramer, PhD, University of Maryland School of Medicine

  • Michael Krawchuk, MD/PhD student, Albert Einstein College of Medicine

  • Peri Kurshan, PhD, Albert Einstein College of Medicine

  • Dennis Lal, PhD, UT Arlington & Cook Children's Health Care System

  • Doris Lin, MD, PhD, Johns Hopkins Medicine

  • Diane Lipscombe, PhD, Brown University

  • Richa Lomash, PhD, NIH/NCATS

  • Laina Lusk, MMSc, CGC, Children’s Hospital of Philadelphia

  • Jose Manuelo Fernandez Fernandez, PhD, University Pompeu Fabra (Barcelona)

  • Luca Marsili, MD, University of Cincinnati

  • Qinglong Miao, PhD, Baylor College of Medicine

  • Jacqueline Niu, PhD, Columbia University Irving Medical Center

  • Jeffrey Noebels, MD, PhD, Baylor College of Medicine

  • Maneula Ochoa-Urrea, MD, UTHealth Houston

  • Jen Q. Pan, PhD, Broad Institute of MIT and Harvard

  • George Park, DO, University of Pittsburgh Medical Center

  • Daniela Pietrobon, PhD, University of Padova (Italy)

  • Annapurna Poduri, MD, MPH, Boston Children’s Hospital

  • Zhai Rong, PhD, The University of Chicago

  • Elsa Rossignol, MD, MSc, FRCP, CHU Ste-Justine, University of Montreal

  • Alisa Salazar (PhD Candidate), Brown University

  • Arvin Sarkissian, PhD candidate, Emory University

  • Donna Schaare, PhD, Clemson University

  • Aasef Shaikh, MD, PhD, Case Western Reserve University School of Medicine

  • Sarah Shakin, MD, Children's Hospital of Wisconsin

  • Zeenat Shyr, PhD, NIH/NCATS

  • Abby Silbaugh, PhD, The University of Chicago

  • Lacey Smith, MS, CGC, Boston Children’s Hospital

  • Heather Snell, PhD, Yale School of Medicine

  • Terrance Snutch, PhD, FRSC, FCAHS, FNAI, The University of British Columbia

  • Michael Strupp, MD, FRCP, FANA, FEAN, Hospital of the Ludwig-Maximilians University (Munich, Germany)

  • Gisela Terwindt, MD, PhD, Leiden University Medical Center (Netherlands)

  • Jaafar Tindi, PhD, Albert Einstein College of Medicine

  • Else Tolner, PhD, Leiden University Medical Center

  • George Umanah, PhD, NIH

  • Chi-Kun Tong, PhD, Columbia University Irving Medical Center

  • Arn van den Maagdenberg, PhD, Leiden University Medical Center (Netherlands)

  • Michael Wangler, MD, Baylor College of Medicine

  • Yael Weiss, MD, PhD, Mahzi Therapeutics

  • Sho Yano, MD, PhD, The University of Chicago

  • Samuel M. Young, Jr., PhD, University of North Carolina-Chapel Hill

  • Gerald Zamponi, PhD, Cummings School of Medicine, University of Calgary; Hotchkiss Brain Institute

  • Ginevra Zanni, MD, PhD, Bambino Gesu Children’s Hospital (Rome, Italy)

  • Xiaochang Zhang, PhD, University of Chicago

  • Wei Zheng, PhD, NIH/NCATS

This list was last updated in May of 2026.

Current Members