WASHINGTON, D.C. (June 16, 2015) – As Congress considers the 21st Century Cures Act, advocates for the autism community joined leaders in science and government at the Autism Speaks National Leadership Summit today to advance research and policies benefiting people with disabilities. The summit highlights achievements and goals, and focuses on the lifelong needs of people with autism.
“Our goal is to determine how we can collaborate to do more good, in more places, for even more people affected by autism in every community in the country,” said Autism Speaks President Liz Feld. Much of the discussion focuses on partnerships that are accelerating progress.
The co-sponsors of the 21st Century Cures Act (H.R.6), Rep. Fred Upton (R-MI) and Rep. Diana DeGette (D-CO), together delivered the keynote presentation, “The Race for 21st Century Cures.” They said they have looked at, “the full arc of this process, from the discovery of clues in basic science, to streamlining the drug and device-development process, to unleashing the power of digital medicine and social media in treatment delivery.”
The panelists discussed how the revolution in genomic medicine – epitomized by Autism Speaks’ MSSNG project with Google – is deepening our understanding of autism’s origins and speeding research that promises to deliver personalized treatments. The MSSNG project is sequencing the genomes of 10,000 people affected by autism.
Panelists pointed to the possibilities of precision medicine in the search for the causes and cures for developmental disorders. Jo Handelsman, associate director for science in the White House Office of Science and Technology Policy, discussed the importance of President Obama’s Brain Initiative, launched in 2014, and the Precision Medicine Initiative, launched earlier this year.
As for the immediate needs of families, Dr. Thomas Insel, director of the National Institute of Mental Health, said, “Some of the things we can do right now to make a difference are early detection, early intervention, making sure there are services, and helping adults.”
Rob Ring, Autism Speaks chief science officer, expressed appreciation for “those who are leading the charge” in delivering personalized treatment for autism and other developmental disorders. “We need to think of autism as a whole body disorder and not just a disorder of the brain,” he said. “We need to put the individual and their families into the centerpiece of this research.”
Alongside the scientific progress, the panelists applauded legislative milestones. With support from congressional leaders and activists nationwide, Autism Speaks worked toward successful passage of the Combating Autism Act of 2006, the primary vehicle for federal funding for autism research and services. Reauthorization legislation, called Autism CARES, passed in 2014. The authorized federal funding for autism has been provided to the National Institutes of Health, the Centers for Disease Control and Prevention, and the Human Resources and Services Administration.
Senator Kelly Ayotte (R-NH), who co-sponsored the Autism CARES Act, underscored the importance of the Achieving a Better Life Experience Act (ABLE), which was signed into federal law in 2014. ABLE allows states to offer 529-savings plans for disability expenses. “We need to empower individuals to live the best quality life,” said Senator Ayotte. “And the legislation that we passed called the ABLE Act is a tremendous step forward."
With the summit’s focus on the future and the power of collaboration, Feld said, “What matters is not what Autism Speaks has done. What matters is what the community has done -- what you have done.”
On Wednesday, autism activists and families fanned out on Capitol Hill to encourage legislators to join the Congressional Autism Caucus, and pass vital legislation, including the 21st Century Cures Act and Avonte’s Law, a bill introduced by Senator Charles Schumer (D-NY) that would provide voluntary tracking devices for children with autism who wander.