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Upcoming Events

  • June 15, 2023 - VCP Scientific Focus Group
    Thu, Jun 15
    Jun 15, 12:00 PM – 12:05 PM EDT
    Novel VCP Activators Reveal Phenotype-Activity Relationships Edward Lee, MD, Ph.D., Associate Professor at the University of Pennsylvania., Co-Director, Institute on Aging
  • 2023 I CAN MOVEment
    Sun, Jun 18
    Virtual Fundraiser
    Jun 18, 12:00 AM – Jun 24, 11:50 PM
    Virtual Fundraiser
    Join us as we turn "I CAN'T" into a "I CAN" MOVEment to cure VCP disease. It's a virtual Move-A-Thon that culminates the week of June 18-24.
  • VCP Connections Conference - 2023 Family Gathering
    Jul 20, 6:00 PM PDT – Jul 22, 8:00 PM PDT
    Las Vegas, 301 E Fremont St, Las Vegas, NV 89101, USA
    Join us in Las Vegas for an awesome time of connection! The 2023 Family Connections Conference will focus on patient engagement and interactions with other participants.
  • 2023 Cure VCP Disease Celebration
    Aug 12, 6:00 PM – 10:00 PM EDT
    Atlanta, 1465 Howell Mill Rd NW, Atlanta, GA 30318, USA
    Join us for great food, drink, fellowship, a fun auction, and chance drawing items at our annual Cure VCP Disease Celebration on August 12th at the Urban Tree Cidery in Atlanta, GA.
  • September  21, 2023 - VCP Scientific Focus Group
    Thu, Sep 21
    Sep 21, 12:00 PM – 12:05 PM EDT
    p97 R155H mutant motor neurons have disrupted lysosome homeostasis. Malavika Raman, Ph.D. Assistant Professor at the Tufts University School of Medicine.
  • Oct 19, 2023 - VCP Scientific Focus Group
    Thu, Oct 19
    Oct 19, 12:00 PM – 12:05 PM EDT
    Proteomic studies in VCP pathology toward the definition of disease markers and starting points for therapeutic intervention concepts. Andreas Roos, Ph.D.
  • Patient Happy Hours
    Time is TBD
    Zoom Link
    Time is TBD
    Zoom Link
    These Zoom meetings are a way to connect with VCP families around the world and share experiences. There is no agenda or drink required.
  • Scientific Office Hours
    Time is TBD
    Zoom Link
    Time is TBD
    Zoom Link
    Once a month, our Chief Scientific Officer, Dr. Armelle Pindon, hosts open office hours for patients and families to ask their scientific questions about VCP. You are welcome to join and chat or just listen. A zoom link is provided on our home page and facebook page.

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.


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.

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