Upcoming Events

  • 2022 Cure VCP Disease Patient and Care Partner Conference
    Jul 22, 9:00 AM CDT – Jul 23, 8:00 PM CDT
    The Westin St. Louis, 811 Spruce St, St. Louis, MO 63102, USA
    Empowering our Community with Hope!

The Westin St. Louis

811 Spruce Street | St. Louis, MO

Meet The Presenters

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Nupur Ghoshal, MD, PhD

Associate Professor of Neurology and Psychiatry, Washington University at St. Louis

Dr. Ghoshal’s areas of clinical interest include: Alzheimer’s disease, neurodegenerative disease, neurodegenerative disorders, dementia, Parkinson’s disease, memory loss, Lewy body dementia, cognitive function, geriatric neurology. When not busy working, Dr. Ghoshal loves to pursue her interests in fine arts, theatre, museums, and the ballet.

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Megan Iammarino

Physical Therapist, Nationwide Children’s Hospital

Megan Iammarino, PT, DPT, works as part of the Neuromuscular Physical Therapy team with the Research Institute's Center for Gene Therapy, MDA Clinic and SMA Clinic. She has been studying VCP patients for over one year as part of the VCP Natural History Study in the Alfano Lab.

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Gerald Pfeffer, MD, PhD

Associate Professor of Medical Genetics, University of Calgary

Dr. Pfeffer is a clinician-scientist studying adult-onset neurogenetic conditions. Projects in his lab are attempting to identify novel genetic disorders, mechanisms of disease, and disease biomarkers. We have a special interest in mitochondrial dysfunction and perform studies using human cell lines and tissues. Dr. Pfeffer serves on the Cure VCP Disease Medical Advisory Board and served in a key role on the development of the standard of care project.

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Armelle Pindon

Director of Scientific Engagement and Collaborations, Cure VCP Disease, Inc.

Dr.Pindon has more than 20 years of experience in academic research and pharmaceutical industry (Janssen Pharma, Johnson & Johnson), leading various drug discovery projects and with a broad range of consultancy missions in Research & Development for biotechnology companies and ultra-rare disease foundations. She received a Ph.D. in Neuroscience from the University of Paris, France, and started her academic carrier at the Myology Institut of the Hospital La Saletriere in Paris.

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Amber Sapp

Physical Therapist, Casimir

Amber Sapp is the Lead Physical Therapist for Casimir and has a private practice. She facilitated in the development of the Duchenne Video Assessment (DVA), as well as the DVA Training Certification Program for physical therapists, and is currently adapting their use in other disease populations such as Limb Girdle Muscular Dystrophy.  Amber earned her Doctorate degree in Physical Therapy from Belmont University in Nashville, TN.  She is very active among DMD advocacy groups, in the DMD community, and also cares for her own son living with Duchenne Muscular Dystrophy.

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Chris Weihl, MD, PhD

Professor of Neurology, Washington University at St. Louis

Dr. Weihl focuses his practice on the mechanisms of weakness and atrophy related to neuromuscular disorders. Our lab is particularly interested in the pathogenesis of IBMPFD, a multisystem degenerative disorder. Dr. Weihl serves on the Cure VCP Disease Medical Advisory Board and serves a s a mentor to young investigators and the Cure VCP Disease Board of Directors.

A Special Thanks to Our Conference Planning Team:
 

Amy Casey, Tom DeWald, Brandon Feldt, Cammie Knudsen, Brian Petschel, Allison Peck, Jan Reimer, Karen Traxler, and Todd Warner 

 

This Conference made possible through funding by the CZI Rare As One Grant and AllStripes.