Our Mission & Vision
Our mission is to support translational research that will lead to the development of FDA-approved treatments and an improved standard of care for co-morbidities in individuals with autism.
Our vision is health, independence, and well-being for every person on the planet with neurological conditions, including Autism Spectrum Disorder diagnosis.
Autism Spectrum Disorder (ASD) is the fastest growing developmental disability. Today, 1 in 44 children is diagnosed with autism in the US, and larger numbers have speech and language impairments, learning difficulties, and so on.
You probably already knew that. But did you also know that:
is the average lifespan in severe autism
the average lifespan in high-functioning autism (Asperger’s syndrome)
children and adults with autism suffer seizures
have self-injurious behaviors
of adults with autism are unable to hold down a full time job
Depression affects an estimated 7% of children and 26% of adults with autism.
Lifelong health problems
Poor quality of life outcomes
The magnitude of the problem is also reflected in broader social, health, and monetary statistics: in 2015, it was estimated that the total cost of ASD was around $268 billion. By 2025, this figure is forecast to increase to around $461 billion.
Indirect costs include the mental and physical strain borne by caregivers. The stresses of caring for a child or adult with autism result in parents/caregivers suffering high levels of stress (comparable to combat soldiers), poor mental and physical health, lowered family income, and high divorce rates.
Yet, there are only two FDA approved treatments for autism, both addressing only a narrow scope of surface symptoms!
Estimated cost of autism to US economy in 2015
Current state of autism research and funding
Even though the societal cost of autism is equal to that of diabetes, and more than five times that of stroke or hypertension, the ever-increasing prevalence rates of autism and the associated costs are showing no signs of slowing down, and autism research is still grossly underfunded. Additionally, over 90% of research funding by major funders (NIH, SFARI, and AS) goes towards only three areas of autism research:
Genetic research: single-gene mutations that explain autism symptoms only account for less than 5% percent of those diagnosed with ASD. 100s of millions of research dollars spent on genetic research have not yielded actionable targets for the vast majority of affected families.
Behavioral/socio-psychological research: This research focuses on understanding behavior to provide psychological and social support to affected individuals. While of massive importance, this area of science is only a part of the solution, unable to tackle the problem holistically.
Basic bench-side research (pre-clinical research including animal models, organoids, etc): This area is getting some, although limited, funding from the major funders. However, the basic microbiology/neuro-immunology has to be funded more aggressively and translated to the development of therapeutics to have a significant positive impact.
While these areas of research are essential, they are far from sufficient. There are huge areas of autism research that are largely underfunded, causing great suffering that urgently need tackling.
Inequality in access to care and treatments
In some cases this is due to treatments successfully addressing co-morbid or underlying health problems, resulting in the child feeling better and functioning and developing more fully. But in some cases there are strong indications that treatments and therapies are able to address the core autism pathology.
However, this is not being appropriately studied in any systematic manner. It is not known why some individuals with autism respond to some treatments and not the others, meaning that we cannot extrapolate individual success to benefit a large number of people in need.
This leads to great inequality and needs to change.
Some parents are able to spend enormous time researching the literature, relying on patient groups on social media and doctor shopping and paying out of pocket for treatments. This madness has to stop.
We have to encourage pre-clinical research and create a community of “trial-ready” patients to get to FDA-approved drugs, so ALL patients have equal access to treatment. This access to care should not just benefit those with advanced degrees or higher disposable income.
Lack of physician awareness and training
A large majority of physicians are not aware and educated in treating patients with autism. Many are not aware of the high rate of medical co-morbidities in children and adults with autism, and do not maintain a high index of suspicion for recognizing and addressing the symptoms and causes of those co-morbidities, in patients who may not communicate reliably.
Furthermore, there is a widespread ‘diagnostic overshadowing’ – the tendency to dismiss all external signs and behavioral manifestations that could be indicative of physical problems and ascribe them to ‘autism behaviors’.
This often results in delayed or missed diagnosis and treatment of medical issues in autism, and adds to the already large health inequalities suffered by affected children and adults and their families.
Research-based educational and awareness-raising initiatives, such as webinars, booklets, live talks etc. need to be made available.
The Good News
The good news is that there are some absolutely brilliant researchers and clinicians at major research centers and hospitals all over the US working hard at developing evidence-based treatments that can evolve into an FDA approved standard of care.
Neglected Areas of Research
Severe autism is severely neglected in all research.
There is insufficient research to address health issues that cause suffering and early deaths in ASD. There is inadequate effort to address the heterogeneity of ASD. Accelerated translational research is sorely needed – translating existing bench-side and animal studies into actionable human studies and treatment trials.
What Needs to Happen
There are many small successful treatment trials that need to be followed up with large studies. Many promising existing FDA-approved drugs could be repurposed for the autism population, leading to a better standard of care. At the moment there are no reliable biologically based biomarkers available to guide diagnosis or treatment response. This needs to change.
Our Approach – ASD plus co-morbid conditions (Autism+)
The BRAIN Foundation seeks to do better for individuals with ASD+ and their families by providing an open space for multi-disciplinary science symposia and working groups, tools for easier collaboration and access to resources to fund the whitespace in autism research. We believe a total reassessment of existing paradigms will create a context for accelerated results.
Our Goal, Activities and Impact
The goal of the BRAIN foundation is to catalyze scientific research that can improve the quality of life for those with neurological disorders and developmental disabilities through safe and evidence-based medicine.
To this end we:
Research that has the promise of evolving into FDA- approved treatments
Organise think-thanks and working groups of scientists and clinicians
Provide educational opportunities for clinicians and the public
What Sets Us Apart
Our approach to funding medical research will always be informed by the voices of individuals at every level of the autism spectrum, their families, clinicians and an esteemed Board of Scientific Advisors from leading medical research institutions. It also reflects an evolving view of health, happening at the intersection of IT and biology, which is accelerating answers for many complex health conditions.
One thing that is specific and unique to The BRAIN Foundation, and what sets us apart from most other autism non-profits in the US, is that we have a direct finger on the ‘autism’ pulse. Our leadership has direct lived experience of the problems faced by those affected by autism and their families.
The BRAIN Foundation is an intrinsic part of the community it serves. Our science advisory board has not just deep and long-standing professional experience and vast amount of knowledge, but also often first-hand personal experience. Many clinicians and research sitting on our advisory boards are themselves parents or family members of children and adults with autism.
We do not sit in ivory towers, we live and breathe autism.
We KNOW first-hand of the problems faced by our children, siblings, grandchildren with autism. We TASTE the bitter disappointment of the lack of progress and solutions. We SEE first-hand how research that focuses on the most urgent problems eases every day struggles. We FEEL the difference it makes to the lives of people with autism. We are closely involved in the patient community HEAR feedback from our families every single day.
We will not give up on achieving our goal of changing the outcomes, of improving lives and making the dreams possible.
Help us to continue making a difference!
We need your support in order to continue to fund research that makes a difference.
Every donation or fundraising effort, however large or small, goes a long way!
Make A Donation
100% of your donation goes towards funding desperately needed research.
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