We’re driving systemic change to improve care, support and equity for the millions of people living with schizophrenia and psychosis spectrum disorders. Our programs align with the pillars of our 10-Year Strategic Plan, and focus on solving foundational problems that create barriers to treatment, support and survival.
The Schizophrenia & Psychosis Action Alliance solves foundational problems that create barriers to treatment, support and survival for people living with schizophrenia and those who care for them. Our programs align with the pillars of our 10-Year Strategic Plan: Research, Education & Care and Advocacy & Public Policy.
Your generous support is critical to our work in 2024 and beyond. Your funding will help fuel the collaborations, research and policy changes required to transform the model of care for schizophrenia.
We are solving foundational problems that create barriers to treatment, support and survival for people living with schizophrenia and those who care for them.
Accelerate earlier diagnosis and breakthrough treatments and uncover the societal, caregiver and patient costs of schizophrenia to improve resources for care.
S&PAA co-hosted the first Externally Led Patient-Focused Drug Development Meeting on schizophrenia to make what matters to those living with the disease a higher priority in drug development and the FDA review process. Our resulting Voice of the Patient report was published in 2023.
S&PAA is part of the National Institutes of Health’s AMP-SCZ Steering Committee to help improve schizophrenia treatments and treatment outcomes by identifying early indicators of the severe brain disease.
S&PAA sits on the Steering Committee of this Stanley Center for Psychiatric Research program to gain insight into disease mechanisms (molecular and cellular “triggers”), stratify patients within the disease spectrum and validate candidates for drug development by seeking and analyzing biomarkers in cerebrospinal fluid.
S&PAA provides patient perspectives and expertise to industry organizations to accelerate the development of innovative treatment approaches for people with schizophrenia and psychosis spectrum disorders.
S&PAA’s survey of caregivers of adults with schizophrenia or schizoaffective disorder spotlighted the severe brain disease’s negative impact on finances, career and family lives.
S&PAA’s Societal Costs of Schizophrenia Impact & Related Disorders report revealed that the severe brain disease costs the US $281.6 billion per year.
Provide resources for individuals, families and healthcare professionals to improve patient and caregiver outcomes.
S&PAA launched our first continuing professional education program in 2023 to advance provider knowledge of state-of-the-art methods for treating schizophrenia and infuse the perspective of those living with the disease. Hundreds of clinicians have completed the program to date.
Drive systemic change to fix our broken healthcare system and create equitable access to high-quality care for people with schizophrenia.
On World Schizophrenia Day, S&PAA organized our first Day of Action, driving 3 events to address system-wide barriers to care for people living with schizophrenia.
Our impact grows with every donation. Together, we can create a healthcare system where every individual, regardless of their condition, is treated with respect and dignity.
We have launched a campaign to reclassify schizophrenia as a neurological brain illness and inform the entire community this illness deserves treatment, not punishment. This campaign has included letters to the CDC and World Health Organization with support by the non-federal members of the ISMICC.
Since 1985, thousands of people have been supported by more than 150 Schizophrenia Alliance support groups that meet throughout the United States, Australia, Brazil, Canada, Mexico, France, Russia, Germany, India, Hungary, Singapore, Uruguay, Japan, Kenya, Iran, and Venezuela.
Virtual SA groups and Families for Care Support (FFC) groups provide individuals with the opportunity to connect with others affected by psychosis spectrum disorders, engage with treatment providers, find support, become educated, and increase their understanding. Both groups have increased in participation from just two participants to hundreds of regular attendees. To meet this demand, groups have gone from one meeting per week up to twelve times each week.
SCZ Health StorylinesTM App
In October 2015, we launched the SCZ Health StorylinesTM app for diagnosed individuals and caregivers. Created in partnership with Self Care Catalysts, this app was designed based on feedback from diagnosed individuals and caregivers. Today, there are approximately 1,000 downloads of the app.
The Keshavan Lab at Beth Israel Deaconess Medical Center and Harvard Medical School also collaborated with us in our unified mission to better understand schizophrenia, offer the best care possible to diagnosed individuals, and provide support for families.
Using the Health StorylinesTM app, the Keshavan Lab is learning more about the experiences of those living with schizophrenia outside of typical clinic settings through real-time information about symptoms and community interactions. We hope to learn much more from this anonymized information collected by the Health StorylinesTM app.
In collaboration with theBloc, we launched Hearing Voices of Support (HVoS) in October 2016. HVoS is an initiative to help ensure people affected by schizophrenia-related brain illnesses are heard and, in return, hear voices of support from the wider community. On October 30, 2016, the first billboard highlighting schizophrenia launched in Times Square. On December 8, 2016, more than 40 volunteers formed a flash mob and sang “Brave” in the middle of Times Square to highlight the need for positive support for people affected by psychosis spectrum disorders.
The first HVoS Experiential Event was held in New York City during Schizophrenia Awareness Week, the third week of May. HVoS garnered great attention as a “first” in a powerful positive effort to educate and eliminate stigma and discrimination about psychosis spectrum disorders. Our organization has since received major grants to help with the production of the experiential event and will install the next event in Washington, D.C. in conjunction with a scientific briefing for legislators.
The HVoS Perception Changing Art Installation included exit interviews and written surveys that indicated that nearly 90% of the participants left better understanding schizophrenia and felt the need to help people who experience psychosis spectrum disorders.
Television, cable, radio, and other media interviews as well as videos with individuals affected by schizophrenia spectrum brain illnesses have helped communities understand that schizophrenia is a neural-circuitry brain illness and everyone deserves treatment, not punishment. Understanding, education, and compassion built through this outreach will produce a paradigm shift and bring treatment to our family members, colleagues, and neighbors instead of inhumane incarceration and homelessness.
Schizophrenia & Psychosis Action Alliance engages with audiences on multiple social platforms, sharing information about our activities and promoting other news of interest to the schizophrenia and psychosis disorder community.
We have developed partnerships with many stakeholders to help advance our initiative.
Our national conferences have been held annually since 2012 in Houston, Texas; Detroit, Michigan; Bethesda, Maryland; Rochester, New York; New York City; and virtually from Hollywood, Florida during COVID-19.
Conferences provide friends, families, and professionals with knowledge to aid individuals in recovery. They also focus on the challenges faced by professionals, the criminal justice system, and policymakers.
Speakers have included:
We were proud and honored to nominate Dr. Tamara Navarro in 2012 and Dr. Fredrick Frese in 2013 for the Lilly Reintegration Award for Mentorship and Advocacy. The National Council for Community Behavioral Healthcare recognized both nominees with one of their most prestigious awards in behavioral healthcare.
S&PAA is proud to honor outstanding individuals working courageously in the face of devastating obstacles to educate professionals, the public, and diagnosed individuals, eliminate stigma and discrimination, advocate for access to treatment, provide dignity for people living with severe psychiatric brain disorders, and maintain their own personal recovery journey. Awards include:
Joanne Verbanic Award (Founders Award)
This award was initiated by Joanne Verbanic, founder of Schizophrenia Alliance, to recognize those offering immense dedication, inspiration, encouragement, and an unwavering belief in people living with schizophrenia and related disorders. Recipients also support the growth of the Schizophrenia Alliance self-help and peer support network.
Past recipients include: Nora Bylerian, Mike Carr, and Sue Dutch
This award recognizes exemplary individuals who are brain health advocates and work to educate the public about severe neuropsychiatric illnesses all while actively participating in their own personal recovery journey.
Past recipients include: Patrick J. Kennedy, Brandon Staglin, Joanne Verbanic Margery Wakefield, Michelle Hammer, Calen Pick, Megan MacNichol, and Bethany Yeiser
This award recognizes journalists who take significant interest in presenting brain health issues and report brain illness in ways that break myths and shatter stigma with factual information.
Past recipients include: theBloc, Pete Earley, Brianna Ehley, and Richard Gere
This award recognizes providers (physicians, nurses, NPs, social workers, healthcare workers, etc.) who go above and beyond routine requirements to enhance patient care, improve understanding of neuropsychiatric illness, employ innovative and cutting edge interventions, and remain open to patient input for improving services.
Past recipients include: Dr. Robert Laitman, Dr. Robert Moran, and Dr. Michael Mufson
This award recognizes individuals who have utilized legislative initiatives to improve the quality of life and care for individuals affected by schizophrenia and related brain illnesses. Recipients may include individuals in mental health recovery, state or federal legislators, or family members who have proposed or responded to local or national legislation that impacts treatment or the rights of people with a severe neuropsychiatric diagnosis
Past recipients include: Congressman Dr. Tim Murphy, Congresswoman Eddie Bernice Johnson, and Florida State Senator Gayle Harrell
This award recognizes researchers who have designed and implemented studies to enhance the diagnoses or care of those affected by neuropsychiatric illness. Recipients are dedicated to pushing the boundaries of science and including the voices of patients and families through their work.
Past recipients include: Dr. Robert Heinssen, Dr. Deborah Levy, and Dr. Robert Freedman
Questions?
If you or a loved one has thoughts of self-harm, go to a hospital emergency room or dial the National Suicide and Crisis Lifeline at 988.
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Hear the stories of hope, love and challenges shared by caregivers in our community as part of National Family Caregivers Month.
