Cure Autism Now Mission Statement | 2000 #AutisticHistory

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]


CURE AUTISM NOW
MISSION STATEMENT

Mission and Goals

The Cure Autism Now (CAN) foundation is an organization of parents, clinicians and scientists dedicated to finding effective biological treatments, prevention and a cure for autism and related disorders. 

In addition to a primary focus of accelerating and funding critical biomedical research, CAN is also committed to broadening awareness and understanding of a disease that has been virtually ignored for over forty years. 

CAN’s mission takes a three-part approach: 

First and foremost, CAN funds essential pilot research. Applications are reviewed and funded twice a year to guarantee prompt attention to the most critical areas of autism research. 

CAN also works to unite families, clinicians and researchers across the country in order to encourage collaboration and promote awareness and understanding of this disease. These efforts include the dissemination of the latest in biological and treatment information, conferences which bring together families and members of the scientific and medical communities, and think tanks which bring together the top researchers in the field of autism and other highly relevant fields. This collaborative effort also facilitates research on a pragmatic level allowing researchers to link with families who can then become subjects in their studies. 

Finally, CAN pursues a strong activism/awareness program. CAN works with national and local media, Congress and the National Institutes of Health to encourage more aggressive funding of biological research in autism. 

Statement of Need

For years, views of 1950’s psychiatrists like Bruno Bettelheim convinced parents and professionals that autism was a rare emotional disorder caused by trauma or bad parenting. This tragic mistake created a culture of mistrust between families and scientists that lasted for more than 40 years — and an entire generation of children was lost to scientific progress. 

In fact, autism is a neurological disease and, contrary to popular belief, it is not rare. Occurring in 1 in every 500 births, autism is the third most common developmental disability following mental retardation and cerebral palsy. It is more common than multiple sclerosis, cystic fibrosis or childhood cancer. 

Autism is a national crisis affecting over 400,000 Americans and costing the nation over $13 billion a year. Yet, it receives less than 15% of the federal funding of these other childhood diseases. The $25 per-person per-year allocated to autism is in stark contrast to the national funding that is allocated to other common diseases such as Alzheimer’s ($54 per person), M.S. ($158 per person) and AIDS ($1,069) per person. 

These children deserve more, but they do not have the voices to speak for themselves. The autistic child is often unable to speak at all, or accomplish even the most simple task. Sensory disregulation can make a well-lit room or a windy day a terrifying experience. At best, a high-functioning autistic individual might simply seem eccentric, a loner. At worst they can become violent or self-injurious.

People are just beginning to understand autism. Schools have been caught unprepared. As the numbers of autistic students continues to increase, educators are unable to provide the necessary and appropriate early intervention programs so critical to the needs of the very young autistic child. Existing service organizations do not have the means to meet the increasing demand. Researchers are without the funding necessary to pursue new and innovative research avenues. 

CAN believes that we cannot wait for someone else to decide that these children deserve help. The pace of progress in the field of autism can and must be accelerated. 

Current Programs

CAN’s research grant programs were established to promote biomedical research relating to the etiology or treatment of autism and autistic spectrum disorders. The purpose is to encourage innovative approaches towards elucidating the causes, prevention and appropriate therapy of autism. 

To lead this effort, CAN has established a Scientific Advisory Board comprised of top researchers in fields such as developmental biology, neuroimaging, genetics, immunology and molecular biology. This board evaluates the criteria needed to most effectively meet CAN’s goals, reviews all applications for funding, and ensures the highest possible level of accountability.

RESEARCH

Young Investigator Awards: 

To encourage the brightest young minds to enter the field of autism, CAN provides funding to outstanding candidates for work to be carried out under the supervision of a mentor who is an established investigator. While this mentor need not be directly involved in autism research, they must be capable of providing an environment in which the candidate can pursue a project with direct relevance to autism or related disorders. 

These postdoctoral training awards allow a salary stipend of $40,000 and a $1,000 travel (conference) allowance per year for two years, which is slightly higher than average. Funding in the second year is non-competitive, but is predicated on appropriate progress during the first year and the availability of funds. Applicants should be no more than four years out of an M.D. or Ph.D. program on the date the fellowship is to begin. 

Pilot Research Projects:

These awards provide funding for investigators at any stage in their career to work on innovative pilot projects in the area of autism or related disorders. Preference is given to projects that have the potential for grant support from federal or other agencies once pilot studies are completed. 

Projects may be funded up to $40,000 per year, for one to two years. Funding in the second year is non-competitive, but is predicated on appropriate progress during the first year and the availability of funds. CAN allows for an additional indirect cost supplement of up to 10% of direct costs. The intent of this award is to provide funding for supplies, equipment or personnel. No salary support for the principal investigator is allowable. 

Treatment Related Grants 

Treatment related grants are available from CAN, and may be submitted at any time during the year. 

Bridge Grants: 

These grants, typically under $10,000, are available to scientists on an as needed basis and are intended to facilitate the completion or initiation of a critical research project. Some examples of use of funds include, but are not limited to, bridge financing, organization of preliminary data prior to application or publication, preparation of pilot data and small study replication. 

COLLABORATION

At the heart of CAN’s mission is a commitment to collaboration. To that end, CAN works to unite families, clinicians and researchers – communities that have long been disconnected from each other – as well as encouraging collaboration and coordination among researchers from varying fields. CAN will also help in subject recruitment for CAN funded, NIH and reputable independent studies. 

Think Tanks: 

Recent advances in fields such as AIDS and Huntington’s disease prove that the most efficient and effective way for scientists to address a complex disease is to work together – pooling resources and ideas. Using a model set up by the Pediatric AIDS Foundation, CAN has held several Think Tanks across the country. Bringing together scientists from different institutions and areas of expertise to discuss recent advances, share ideas, and ultimately map a course for the future, these meetings provide an environment that fosters cooperation and not competition. 

Parent and Professional Conferences: 

CAN has sponsored numerous biomedical research conferences in locations across the country to inform families and professionals of the latest biomedical research, diagnostic and treatment information. These conferences deliver cutting-edge research findings and foster much needed collaboration between families, caregivers, clinicians and researchers. This effort also facilitates research on a pragmatic level allowing researchers to link with families who can then participate in their studies. 

RESOURCE DEVELOPMENT 

One important outcome of the first CAN Think Tank was the consensus among scientists that genetics should be a priority in autism research. Previous attempts to study the genes implicated in autism were met with little success as researchers were faced with extreme difficulties in enrolling multiplex families. Limited resources and an inability to locate and reach families outside of their geographic area made recruiting an almost impossible task. Those that did take on the challenge were then unwilling to share their samples. The establishment of a collaborative genetic resource could reduce these obstacles and speed up the pace of autism research by at least a decade. 

Autism Genetic Resource Exchange (AGRE): 

As a family based organization, CAN recognized its unique position to recruit multiplex families (families with more than one member affected by autism). Taking the directive of leading scientists in the field, CAN established the Autism Genetic Resource Exchange (AGRE) – the world’s first truly collaborative gene bank for genetic research in autism. 

As a result of a national recruiting effort, CAN has been able to use its resources to recruit families at a pace that is up to 20 times faster than other institutions. The genetic samples from these families will be made available to all qualified researchers, thereby supporting the work of current researchers, encouraging prominent scientists in related neurological fields to investigate autism, and encouraging talented new researchers to enter the field. 

EDUCATION/OUTREACH/ACTIVISM

In response to an over 40 year lapse in scientific understanding and progress in autism, CAN is committed to broadening awareness and understanding of autism among private, professional and medical communities throughout the country and internationally. 

Resource and Referral Services: 

Even today, parents and professionals are only beginning to understand autism. Each day the volume of phone calls, e-mails, and written correspondence CAN receives increases – adding up to more than 750 personal communications per month for our Los Angeles office alone. The growing need for up-to-date information is immense and CAN works hard to disseminate this information through our website, parent information/resource packets, and a vast array of articles and referral listings. 

Activism and National Awareness: 

CAN works with national and local media, Congress and the National Institutes of Health to encourage increased awareness and more aggressive funding of biological research in autism. CAN promotes collaboration among the NIH funding institutes, as well as increased funding. To ensure this, CAN works to educate legislators as to the true cost, prevalence and devastation of autism. 

Accomplishments

In just over four years, CAN has . . . 

  • Through funding and commitments of almost $6 million in only four years, CAN is the largest private funder of autism research and resources in funding for pilot research grants, young investigator awards, bridge grants and support for the Autism Genetic Resource Exchange (AGRE). 
  • Helped to triple the number of scientists working in the field of autism. When CAN was initially founded, only a handful of established researchers (less than a dozen) were working in the field, and very few new scientists were entering the field. CAN has helped to dramatically increase these numbers through direct funding and collaboration. 
  • Established the world’s first collaborative gene bank for autism – the Autism Genetic Resource Exchange (AGRE). Already the growth of this resource has far exceeded expectation. The initial goal was to enroll 100 multiplex families within one year. To date, 608 families have been enrolled. The actual blood drawing process has resulted in over 150 family cell lines growing at the AGRE repository at the University of Indiana. In 1999 CAN published the first AGRE catalog which has been made available to the scientific community. 
  • Sponsored several Think Tanks resulting in significant progress in key areas including resource availability, and physician awareness. The first of these meetings resulted in the establishment of AGRE. The second, the CAN Consensus Conference, was held for the urgent purpose of bringing together the top experts in the autism clinical and research communities to establish, for the first time, a consensus statement providing guidelines for a medical work up in autism. In March of 1998, the resulting CAN Consensus was published in CNS Spectrums Journal. This document now serves as a guideline for clinicians and families seeking medical testing and care for individuals with autism, and is being used as a blueprint for the formulation of the consensus statement for the National Institutes of Health. 

    In October 1997, CAN joined with The John Douglas French Alzheimer’s Foundation to sponsor “Advances in the Social Brain.” This exciting program gave researchers from the fields of autism and Alzheimer’s an opportunity to work collaboratively for the purpose of exploring newly discovered relationships among the brain, genes and behavior. Participants included leaders in cognitive psychology, behavioral neurology, genetics, and molecular biology. 
  • Created a core group of trained diagnosticians. Historically, obtaining a diagnosis has been one of the most difficult obstacles families with an autistic child face. Too few clinicians are trained to recognize or diagnose this unbelievably common disease. As a result, the process can often take months or even years – time that is critical to the success of early intervention and treatment methods. 

    CAN has provided training for fourteen (14) diagnosticians to date, and is currently coordinating a workshop to train an additional ten (10). These individuals, taught by the creator of the Autism Diagnostic Interview, travel throughout the country on behalf of CAN and numerous leading universities. 
  • Worked with the federal government to turn attention and funding toward autism. When CAN was established in 1995, the National Institutes of Health (NIH) devoted only $5 million of their annual budget to the area of autism. This year, thanks in large part to CANŐs efforts, roughly $15 million will be allocated to autism. CAN was also the force behind the formation of the first Autism Coordinating Committee through the four autism funding institutes at the NIH. 

    Recently CAN has been working to help introduce the Advancement in Pediatric Autism Research Act. This proposed legislation stands to have an incredible impact on the future of autism research. In addition to increasing the current allocation for autism from $15 million to over $50 million per year for five years, it is designed to provide a national physician awareness program, and secure the establishment of Centers of Excellence for autism. These centers, which would exist across the country, would combine clinical and basic research in autism, and draw the attention of the nationŐs top scientists. 
  • Obtained extensive media coverage. Both CAN and autism have been featured in national and local media. Articles have appeared in mainstream publications including People Magazine, Newsweek and USA Today; entertainment industry trades including The Hollywood Reporter and Variety; science-based periodicals including Science Magazine and CNS Spectrums Journal to name a few. CAN has also received radio coverage from National Public Radio and Chancellor Media affiliates across the country, as well as television news coverage relating to fundraising events and press conferences across the country. 
  • Opened chapters in areas across the country in order to broaden outreach, awareness and fundraising efforts. CAN currently has active chapters in Los Angeles, CA; San Francisco, CA; Chicago, IL; Paramus, NJ; and Baltimore, MD. Plans are also underway to begin chapters in Washington State and Southern California in 2000. 
  • Established a base of over 22,000 supporters. This includes parents, family members, educators, clinicians, researchers, therapists, friends, celebrities, corporations and foundations from across the country and the world. 
  • Held ten Parent & Professional Conferences throughout the country. These forums, attended by thousands of parents and professionals, provide an opportunity to inform attendees of the latest biomedical research, diagnostic and treatment information, distribute valuable resources, and foster much needed collaboration. 

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Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.


The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.


Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.


[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]


Fact: Vaccines Do Not Cause Autism.


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