Our Mission

By supporting key strategic medical research initiatives worldwide, Mending Minds Foundation (MMF) aims to change the trajectory for children with devastating post-infectious neuroimmune disorders, including Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

A massive number of children are experiencing these devastating neuroimmune disorders, which is creating a mental health crisis worldwide that greatly impacts the lives of children and their families. Because these diseases are believed to be organically based and immune-mediated, prompt diagnosis and medical treatment can yield better outcomes and restore happy childhoods. Families with children suffering from these conditions face a shocking lack of resources and understanding. Only through increased research will diagnostic and therapeutic care improve.

Our Story

A dedicated group of parents, clinicians, scientists and business leaders in greater Boston, Massachusetts, is guiding the Mending Minds Foundation (MMF) to partner with world-class scientists in the hub of international research and discovery.  Our goal is to support excellence in clinical care while providing sustainable funding of cutting-edge science to build the groundwork for understanding of PANDAS and other childhood post-infectious neuroimmune disorders. This funding will be targeted to rapidly develop diagnostic tools and effective treatments, while disseminating information worldwide, to drive research to better understand and treat these difficult diseases.  Our model is the success achieved generations ago with Sydenham’s Chorea, a related condition caused by streptococcal infection with primarily motor symptoms that is more readily diagnosed and is now quite rare in developed countries.

Biobank

Diagnostics Biomarkers

Clinical Trials

Dissemination of Information

and Research Findings

Data Registry

Development of a Uniform
Treatment Consensus

Implementation of

Research Consortium

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Establishment and Support of

Clinical Centers of Excellence

Implementation of a Research Consortium

Strategically drawing from renowned scientific minds worldwide, Mending Minds Foundation is already fostering a network beginning with researchers at Harvard, Massachusetts Institute of Technology (MIT), Boston Children’s Hospital, Massachusetts General Hospital, Stanford University and other international partners. MMF is supporting this consortium to launch major research initiatives and facilitate collaboration between scientists and clinicians worldwide.

Clinical Trials

Currently there are no enrolling clinical trials anywhere in the world. Mending Minds Foundation is dedicated to working with researchers and government and medical institutions to develop sound clinical hypotheses for enhanced medical care of children with PANDAS and PANS that may be evaluated in well controlled clinical trials.  Once clinical trials are approved, summaries will be posted here and we will direct you to ClinicalTrial.gov for further information.

Data Registry

Currently, no consensus exists in the medical community on treatment of post-infectious childhood neuroimmune disorders including PANDAS and PANS. Robust data collection is needed to elucidate the relationship between clinical presentation, timing and type of intervention, and outcome. Mending Minds Foundations believes that large-scale data analysis will further medical consensus regarding treatment approaches for children with these conditions and transform clinical care into precision medicine, enabling an optimal match between a patient and optimal clinical intervention.

Dissemination of Information and Research Findings

Clinicians world-wide need access to accurate information and up-to-date research to ensure a consensus clinical approach for patients, including differential diagnosis and best practice treatment guidelines. Building a mechanism for information sharing and collaboration between scientists and doctors will ensure that scientific discoveries impact clinical practices and that clinical experience informs research.

Diagnostics Biomarker

Children suffering from PANDAS/PANS face a shocking lack of awareness and understanding.  Due to the lack of research, access to appropriate diagnostic and therapeutic care is severely limited. The challenge lies in the fact that, without a definitive diagnostic test, the symptoms presented in a doctor’s setting are under-recognized.

Following creation of a biobank, researchers will focus on identification of biomarkers of PANDAS/PANS.  A biomarker is a “physical indicator” rather than a behavioral or symptomatic one, and therefore vital to the development of easily accessible diagnostic tools for use by pediatricians and clinicians worldwide. Without a reliable biomarker, a diagnosis of PANDAS or PANS a clinical diagnosis must be made based solely on clinical presentation, which leads to frequent misdiagnosis. This makes effective treatment less likely, with devastating results for patients and their families. Mending Minds Foundation and its scientific advisors believe that innovations in biomarkers and diagnostic testing will prompt the development and implementation of diagnostic guidelines and improved treatment for PANDAS and PANS.

 

Because they present to physicians and therapists with prominent psychiatric symptoms, children with PANDAS/PANS are frequently diagnosed with purely psychiatric disorders and no tests are performed to determine whether there are underlying infectious, inflammatory, or immune factors.  In the case of PANDAS/PANS, there is a root cause, yet, if it remains untreated, the child’s functioning generally rapidly deteriorates in school, home, and/or community settings.

Biobank

With its location in the Boston, Massachusetts area with access to some of the most innovative neuroscience laboratories, Mending Minds Foundation has targeted establishing a novel data collection and bio-banking process, through a partnership between scientists at Massachusetts General Hospital and Massachusetts Institute of Technology (MIT) and an international team of researchers. This first-of-its-kind collection of biological samples and data will serve as a basis for research into the exact biological mechanism for PANDAS and PANS. Similar efforts to understand and eradicate Sydenham's Chorea, which now benefit from known disease etiology and clear physical and psychiatric symptomatology, will serve as a model for the studies utilizing the new biobank.

Development of a Uniform Treatment Consensus

Currently, no consensus exists in the medical community regarding optimal treatment for children with post-infectious neuroimmune disorders.  Robust and accurate data collection is needed to explain the relationship between clinical presentation, the timing and type of intervention, and clinical outcome. If data can be collected for larger numbers of patients than are available from a single clinical site, it would bring consensus regarding treatment approaches for children with these conditions and would transform clinical care into precision medicine, enabling an optimal match between patient and medical intervention.

Establishment and Support of Clinical Centers of Excellence

Widely regarded as one of the world’s top hospitals, Massachusetts General Hospital (MGH) is home to one of only a few research and treatment facilities in the United States studying PANDAS, a post-infectious neuroimmune disorders.  MMF aims to support MGH and other major clinical treatment and research centers in becoming regional hubs for the dissemination of research and best practices to practicing physicians around the country.