Meet Our Team

Issam Awad, MD

University of Chicago

Chicago, IL

Principal Investigator

Expertise: Neurosurgeon—Arteriovenous malformations (AVM), carotid artery disease, carotid endarterectomy, cavernous angiomas, cerebral aneurysms (brain aneurysms ), cerebral vascular malformations, hereditary hemorrhagic telangiectasia (HHT), neurovascular surgery, skull base tumors, stereotactic radiosurgery, stroke

Karen L. Ball

The Sturge-Weber Foundation

Aurora, Colorado

Expertise: Patient Advocacy—Sturge-Weber syndrome

Kyle Bittinger, PhD

Children's Hospital of Philadelphia

Philadelphia, PA

Expertise: Scientist—bioinformatics, microbiome

Murali Chakinala, MD, FCCP

Washington University

St. Louis, MO

Expertise: Pulmonologist—pulmonary vascular disorders, HHT

Mark S. Chestnutt, MD

Oregon Health & Science University

Portland, OR

Expertise: Pulmonologist—HHT, pulmonary arteriovenous fistula, pulmonary arteriovenous malformation

Harry T Chugani, MD

NYU Langone Health

New York, NY

Expertise: Pediatric Neurologist—epilepsy, neurodevelopmental disabilities

Marianne S. Clancy, RDH, MPA

Cure HHT

Monkton, MD

Expertise: Patient Advocacy—HHT

Anne M. Comi, MD

Kennedy Krieger Institute

Baltimore, MD

Principal Investigator

Expertise: Child Neurologist—Diagnosis and treatment of the neurologic aspects of Sturge-Weber syndrome (SWS) and other capillary malformation-related disorders

Marie E. Faughnan, MD

University of Toronto, St. Michael's Hospital

Toronto, Canada

Principal Investigator

Expertise: Pulmonologist—Hereditary hemorrhagic telangiectasia (HHT), clinical and mechanistic aspects of vascular malformations, clinical epidemiology

Roy Geronemus, MD

NYU Langone Health

New York, NY

Expertise: Dermatologist—cosmetic dermatology, laser surgery

Tarun Girotra, MD

University of New Mexico School of Medicine

Albuquerque, NM

Expertise: Adult neurologist—vascular neurology

James Gossage, MD

Augusta University Medical College of Georgia

Augusta, GA

Expertise: Pulmonologist—hereditary hemorrhagic telangiectasia (HHT), pulmonary vascular diseases, pulmonary hypertension, right heart catheterization, and pulmonary AVM

Adrienne Hammill, MD, PhD

Cincinnati Children's Hospital Medical Center

Cincinnati, OH

Principal Investigator

Expertise: Pediatric hematologist/oncologist—Hemangiomas and other vascular tumors, vascular malformations, hereditary hemorrhagic telangiectasia (HHT), Sturge-Weber syndrome, genetics of vascular anomalies

Blaine Hart, MD

Retired

Expertise: Radiologist—neuroimaging, intracranial hemorrhage, cerebral cavernous malformations

Peter Hountras, MD

University of Colorado

Denver, CO

Principal Investigator

Expertise: Pulmonologist—pulmonary hypertension/pulmonary vascular disease, high altitude pulmonary hypertension, and chronic thromboembolic pulmonary hypertension (CTEPH), and hereditary hemorrhagic telangiectasia (HHT)

Kenneth Imerman, MD

University of New Mexico School of Medicine

Albuquerque, NM

Expertise: Adult neurologist—epilepsy/neurophysiology, sleep disorders

Vivek Iyer, MD, MPH

Mayo Clinic

Rochester, MN

Principal Investigator

Expertise: Pulmonologist—Hereditary hemorrhagic telangiectasia (HHT), chronic cough, severe asthma, institial lung disease, sarcoidosis, unexplained dyspnea

Csaba Juhasz, MD, PhD

Wayne State University

Detroit, MI

Principal Investigator

Expertise: Neurologist—Sturge-Weber syndrome, epilepsy, clinical electrophysiology, stroke, functional and structural neuroimaging of brain tumors, epilepsy, and developmental brain disorders

Raj Kasthuri, MD

UNC School of Medicine

Chapel Hill, NC

Expertise: Hematologist/oncologist—HHT, bleeding and clotting disorders

Helen Kim, MPH, PhD

University of California, San Francisco

San Francisco, CA

Program Director (PI)

Expertise: Scientist—brain vascular malformations, cerebral cavernous malformations, arteriovenous malformations, hereditary hemorrhagic telangiectasia, hemorrhagic stroke, genetic and clinical epidemiology, observational studies, clinical and translational research, rare diseases

Timo Krings, MD, PhD, FRCP

University of Toronto

Toronto, Canada

Michael T. Lawton, MD

Barrow Neurological Institute

Phoenix, AZ

Program Co-Director (Co-PI)
Pilot/Feasibility Projects Core Leader

Expertise: Neurosurgeon—Cerebrovascular disorders (aneurysms, arteriovenous malformations, cavernous malformations, and stroke) and skull base tumors

Cornelia Lee, PsyD

Alliance to Cure Cavernous Malformation

Charlottesville VA

Expertise: Patient Advocacy—CCM

Alex V. Levin, MD, MHSc, FAAP, FAAO, FRCSC

University of Rochester

Rochester, NY

Expertise: Pediatric Ophthalmologist—ocular genetics and gene therapy, children's vision screening, glaucoma, cataract and uveitis

Doris Lin, MD, PhD

Johns Hopkins University

Baltimore, MD

Principal Investigator

Expertise: Neuroradiologist—congenital central nervous system malformation, metabolic disorders, ischemic stroke, non-invasive in vivo imaging

Warren Lo, MD

Nationwide Children's Hospital

Columbus, OH

Expertise: Pediatric neurologist—cerebrovascular disease, pediatric stroke, neurorecovery, clinical trials

Jeffrey Loeb, MD, PhD

University of Illinois at Chicago

Chicago, IL

Principal Investigator

Expertise: Adult neurologist—ALS, Alzheimer's disease, brain function, electroencephalography, epilepsy, genetics of neurological disorders, multiple sclerosis, Sturge-Weber syndrome, translational research

Aimee Luat, MD 

Wayne State University

Detroit, MI

Expertise: Pediatric neurologist/epileptologist—pediatric epilepsy, tuberous sclerosis complex, Sturge-Weber syndrome, Lennox-Gastaut syndrome

Marc Mabray, MD

X-ray Associates of New Mexico

Albuquerque, NM

Expertise: Neuroradiologist—cerebral cavernous malformations, non-invasive imaging modalities

J.J. Mager, MD

St. Antonius Hospital

Nieuwegein, Netherlands

Principal Investigator

Expertise: Pulmonologist—hereditary hemorrhagic telangiectasia, pulmonary hypertension, pulmonary arteriovenous malformations, endobronchial interventions

Douglas A. Marchuk, PhD

Duke University

Durham, NC

Principal Investigator
Pilot/Feasibility Projects Core Leader

Expertise: Scientist—cerebral cavernous malformations, hereditary hemorrhagic telangiectasia, Sturge Weber syndrome, molecular genetics, genetics of vascular malformations

Charles E. McCulloch, PhD

University of California, San Francisco
Career Enhancement Core

San Francisco, CA

Core Leader

Expertise: Biostatistician—implementation science, study design, interdisciplinary research collaboration, data Science, longitudinal and clustered data, big data, data analysis, data visualization, machine learning, patient-reported outcome measures

Jamie McDonald, MS, LGC

Stanford Medicine

Palo Alto, CA

Expertise: Adult neurologist—multiple sclerosis, neuromyelitis optica spectrum disorder, myelin oligodendrocyte glycoprotein antibody disease, epidemiology

John McLaren, MD

Boston Children's Hospital

Boston, MA

Expertise: Pediatric neurologist—Sturge-Weber syndrome, epilepsy, nervous system disorders

Justin P. McWilliams, MD

UCLA Health

Los Angeles, CA

Expertise: Interventional radiologist—HHT, interventional oncology, prostate embolization, vascular disease, dialysis work, liver interventions

Mary "Mollie" E. Meek, MD

Arkansas Urology

Little Rock, AR

Principal Investigator

Expertise: Interventional radiologist—benign prostate hyperplasia, BPH treatments, interventional radiology, minimally invasive treatments for BPH, prostate artery embolization, uterine artery embolization, uterine fibroids, hereditary hemorrhagic telangiectasia

Daniel Miles, MD

Castle Connolly

New York, NY

Expertise: Pediatric neurologist—epilepsy/seizure disorders, tuberous sclerosis, Sturge-Weber syndrome

Leslie Morrison, MD

Retired

Expertise: Pediatric neurologist—neurogenetics, vascular malformations, cerebral cavernous malformations

Marsha A Moses, PhD

Boston Children's Hospital

Boston, MA

Expertise: Scientist—tumor development and progression, precision nanomedicines

Andrew Nixon, PhD

Duke University School of Medicine

Durham, NC

Expertise: Scientist—biomarker development and analysis, clinical trials, oncology

Dilip Pandey, MD, MS, PhD, FAHA

University of Illinois College of Medicine

Chicago, IL

Expertise: Scientist—neuroepidemiology, brain health, neurovascular diseases, cardiovascular disease prevention, clinical trials

Anna Pinto, MD, PhD

Children's Hospital of Atlanta

Atlanta, GA

Principal Investigator

Expertise: Pediatric neurologist—Sturge-Weber syndrome, epilepsy, neurophysiology, neurogenetics

Felix Ratjen, MD, PhD, FRCP

The Hospital for Sick Children

Toronto, Canada

Expertise: Pediatric respirologist—cystic fibrosis, HHT, pulmonary arteriovenous malformations

Edward R. Smith, MD, MBA

Boston Children's Hospital

Boston, MA

Expertise: Pediatric neurosurgeon—moyamoya, aneurysms, arteriovenous malformations, and cerebral cavernous malformations, brain tumors, matrix metalloproteinases, urine biomarkers

Karen L. Swanson, DO

Mayo Clinic

Phoenix, AZ

Expertise: Pulmonologist—robotic bronchoscopy, bronchoscopic lung volume reduction, pleural disease, HHT, lung cancer

Michel Torbey, MD, MPH

OU Health

Oklahoma City, OK

Expertise: Adult neurologist—neurology and neurocritical care, with a focus on stroke and neurocritical care research

Sudhakar Vadivelu, DO

Cincinnati Children's Hospital Medical Center

Cincinnati, OH

Expertise: Pediatric endovascular neurosurgeon—pediatric cerebrovascular disease and stroke, cerebral cavernomas, arteriovenous malformations, moyamoya, hemangioma and vascular malformations, aneurysms, movement disorders, neurostimulation, intraventricular hemorrhage, hemimegalencephaly, retinoblastoma, HHT, CM - AVM

Dilini Vethanayagam, MD, FRCPC

University of Alberta

Alberta, Canada

Expertise: Respirologist—HHT, pulmonary areteriovenous malformations, shunts, embolic strokes, asthma

Shantel Weinsheimer, PhD

University of California San Francisco

San Francisco, CA

Expertise: Scientist—human genetics and biomarker studies of cerebrovascular malformations

Andrew J. White, MD

Saint Louis University School of Medicine

St. Louis, MO

Expertise: Pediatric rheumatologist and immunologist—HHT, JIA, lupus and dermatomyositis

Robert I. White Jr, MD

Yale School of Medicine

New Haven, CT

Expertise: Radiologist—HHT, vascular malformations

Kevin Whitehead, MD

University of Utah

Salt Lake City, Utah

Expertise: Cardiologist—adult congenital heart disease, HHT, echocardiography, hypertension, dyspnea, valvular heart disease, general cardiology, cardioversion

Pearce Wilcox, MD

Scleroderma

Quebec, Canada

Expertise: Respirologist—cystic fibrosis, connective tissue disorders, pulmonary function

Angus Wilfong, MD

Phoenix Children's

Phoenix, AZ

Expertise: Respirologist—cystic fibrosis, connective tissue disorders, pulmonary function

Joseph Zabramski, MD

Barrow Neurological Institute

Phoenix, AZ

Expertise: Neurosurgeon—stroke, carotid artery disease, intracranial arterial stenosis, aneurysms, arteriovenous malformations, and cavernous malformations

Atif Zafar, MD

Unity Health Toronto

Toronto, Canada

Principal Investigator

Expertise: Adult neurologist—complex stroke cases, cerebral cavernous malformation, cerebrovascular diseases, fibromuscular dysplasia, vascular dementia, stroke recovery