About Us
The World Visceral Myopathy Foundation (WVMF) is a 501(c)(3) nonprofit based in Dallas, TX, It's vision is to create a world where Visceral Myopathy is understood, treatable, cured, and no longer a life-threatening diagnosis.
About Us
The World Visceral Myopathy Foundation (WVMF) is a 501(c)(3) nonprofit based in Dallas, TX, It's vision is to create a world where Visceral Myopathy is understood, treatable, cured, and no longer a life-threatening diagnosis.
About Us
The World Visceral Myopathy Foundation (WVMF) is a 501(c)(3) nonprofit based in Dallas, TX, It's vision is to create a world where Visceral Myopathy is understood, treatable, cured, and no longer a life-threatening diagnosis.
Our Mission
Our Mission
The World Visceral Myopathy Foundation exists to treat and cure children with Visceral Myopathy, beginning with ACTG2 and the recurrent R257C variant. We mobilize impactful philanthropy and convene the world’s foremost medical scientists to advance collaborative research that delivers precise diagnoses, genetic and small-molecule therapies, and a cure.
The World Visceral Myopathy Foundation exists to treat and cure children with Visceral Myopathy, beginning with ACTG2 and the recurrent R257C variant. We mobilize impactful philanthropy and convene the world’s foremost medical scientists to advance collaborative research that delivers precise diagnoses, genetic and small-molecule therapies, and a cure.
Our Scientific Advisory Board
Our Scientific Advisory Board
Our Scientific Advisory Board
To strengthen our scientific and medical leadership, our Board of Directors established a Scientific Advisory Board (SAB) made up of distinguished experts in relevant medical and scientific fields. The SAB guides how we fund, support, and influence research and clinical initiatives on behalf of the VM community.
To strengthen our scientific and medical leadership, our Board of Directors established a Scientific Advisory Board (SAB) made up of distinguished experts in relevant medical and scientific fields. The SAB guides how we fund, support, and influence research and clinical initiatives on behalf of the VM community.
Guiding Research & Clinical Strategy
The SAB advises on emerging research, evaluates projects, and shapes our grantmaking, clinical oversight, and patient-centered initiatives.
Guiding Research & Clinical Strategy
The SAB advises on emerging research, evaluates projects, and shapes our grantmaking, clinical oversight, and patient-centered initiatives.
Guiding Research & Clinical Strategy
The SAB advises on emerging research, evaluates projects, and shapes our grantmaking, clinical oversight, and patient-centered initiatives.
Ensuring Scientific Integrity
As independent experts, SAB members keep our work scientifically sound and help identify collaboration opportunities across the rare disease community.
Ensuring Scientific Integrity
As independent experts, SAB members keep our work scientifically sound and help identify collaboration opportunities across the rare disease community.
Ensuring Scientific Integrity
As independent experts, SAB members keep our work scientifically sound and help identify collaboration opportunities across the rare disease community.
Supporting Families & Advocacy
The SAB also shapes our family support programs, informs conference planning, and advocates for greater understanding of VM disorders.
Supporting Families & Advocacy
The SAB also shapes our family support programs, informs conference planning, and advocates for greater understanding of VM disorders.
Supporting Families & Advocacy
The SAB also shapes our family support programs, informs conference planning, and advocates for greater understanding of VM disorders.
Executive Director
Executive Director
The WVMF is governed by its Board of Directors. The Executive Director manages the Foundation’s operations and advances its scientific priorities, with independent expert guidance from the Scientific Advisory Board.
The WVMF is governed by its Board of Directors. The Executive Director manages the Foundation’s operations and advances its scientific priorities, with independent expert guidance from the Scientific Advisory Board.
Sean Kassen, PhD
Sean Kassen, PhD
University of Notre Dame
University of Notre Dame
Scientific Advisory Board
The Scientific Advisory Board brings together medical and scientific experts who advise the Foundation on research priorities, grantmaking, and clinical initiatives.
Sumantra Chatterje, PhD
NYU Grossman School of Medicine
Biography →
Sumantra Chatterje, PhD
NYU Grossman School of Medicine
Biography →
Carlo Di Lorenzo, MD
Nationwide Children's Hospital, The Ohio State University College of Medicine
Biography →
Carlo Di Lorenzo, MD
Nationwide Children's Hospital, The Ohio State University College of Medicine
Biography →
Robert O. Heuckeroth, MD, PhD
Children's Hospital of Philadelphia, University of Pennsylvania Perelmen School of Medicine
Biography →
Robert O. Heuckeroth, MD, PhD
Children's Hospital of Philadelphia, University of Pennsylvania Perelmen School of Medicine
Biography →
Raj P. Kapur, MD, PhD
Seattle Children's Hospital, University of Washington School of Medicine
Biography →
Raj P. Kapur, MD, PhD
Seattle Children's Hospital, University of Washington School of Medicine
Biography →
Joseph M. Miano, PhD
Medical College of Georgia at Augusta University
Biography →
Joseph M. Miano, PhD
Medical College of Georgia at Augusta University
Biography →
Hayat Mousa, MD
Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine
Biography →
Hayat Mousa, MD
Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine
Biography →
Kenton Sanders, PhD
University of Nevada, Reno
Biography →
Kenton Sanders, PhD
University of Nevada, Reno
Biography →
Massimo Vassalli, PhD
University of Glasgow
Biography →
Massimo Vassalli, PhD
University of Glasgow
Biography →
Federica Viti, PhD
National Research Council of Italy
Biography →
Federica Viti, PhD
National Research Council of Italy
Biography →
Michael F. Wangler, MD
Texas Children's, Baylor College of Medicine
Biography →
Michael F. Wangler, MD
Texas Children's, Baylor College of Medicine
Biography →
Sumantra Chatterje, PhD
NYU Grossman School of Medicine
Biography →
Carlo Di Lorenzo, MD
Nationwide Children's Hospital, The Ohio State University College of Medicine
Biography →
Robert O. Heuckeroth, MD, PhD
Children's Hospital of Philadelphia, University of Pennsylvania Perelmen School of Medicine
Biography →
Raj P. Kapur, MD, PhD
Seattle Children's Hospital, University of Washington School of Medicine
Biography →
Joseph M. Miano, PhD
Medical College of Georgia at Augusta University
Biography →
Hayat Mousa, MD
Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine
Biography →
Kenton Sanders, PhD
University of Nevada, Reno
Biography →
Massimo Vassalli, PhD
University of Glasgow
Biography →
Federica Viti, PhD
National Research Council of Italy
Biography →
Michael F. Wangler, MD
Texas Children's, Baylor College of Medicine
Biography →