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.
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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."
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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."
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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.
Kristin Barañano, MD, PhD, Johns Hopkins Medicine
Hourinaz Behesti, PhD, Rockefeller University
Firey Bikri, 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)
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)
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
Samuel Hopkins, PhD, Asklepios BioPharmaceutical, Inc (AskBio)
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
Alexis R. Karlan, MD, Schneider Children’s Medical Center of Israel, Children’s Hospital of Philadelphia
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
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, UTHealth Houston
Doris Lin, MD, PhD, Johns Hopkins Medicine
Diane Lipscombe, PhD, Brown University
Laina Lusk, MMSc, CGC, Children’s Hospital of Philadelphia
Qinglong Miao, PhD, Baylor College of Medicine
Jacqueline Niu, PhD, Columbia University Irving Medical Center
Jeffrey Noebels, MD, PhD, Baylor College of Medicine
Tom Otis, PhD, Lario Therapeutics
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
Elsa Rossignol, MD, MSc, FRCP, CHU Ste-Justine, University of Montreal
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, Kennedy Krieger Institute
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)
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
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