As Congress considers the 21st Century Cures Act, advocates for the autism community joined leaders in science and government today at the Autism Speaks 2015 National Leadership Summit in Washington, DC.
The day’s events began with a science panel and briefing and precede a full day of lobbying by hundreds of Autism Speaks supporters on Capitol Hill.
“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.
Looking into the audience, Ms. Feld thanked Towson University men’s basketball coach Pat Skerry for starting the autism awareness program Coaches Powering Forward. She also thanked Autism Speaks volunteer and ethnic diversity activist Helen Taylor for “reminding us to practice what we preach” and representatives from Alpha Xi Delta fraternities and sororities for “embracing this mission in a way you really can’t find anywhere else,” among others.
The race for 21st Century Cures
The co-sponsors of the 21st Century Cures Act, Rep. Fred Upton (R-MI) and Rep. Diana DeGette (D-CO), together delivered the keynote presentation, “The Race for 21st Century Cures.” They described how 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. Their initiative, they said, is aimed at “closing the gaps between advances in scientific knowledge about cures and the regulatory policies created to save more lives.”
U.S. Senator Kelly Ayotte (R-New Hampshire), who co-sponsored the 2014 Autism Cares Act, underscored the importance of the Achieving a Better Life Experience Act (ABLE). ABLE became law in 2014, following advocacy efforts by Autism Speaks and other disability organizations. It enables states to offer 529-savings plans for people with disabilities. “We need to empower individuals to live the best quality life,” Sen. Ayotte said. “The ABLE Act is a tremendous step forward.”
In related remarks, 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 President’s Precision Medicine Initiative, launched earlier this year.
Putting families first
Autism Speaks Chief Science Officer Rob Ring expressed appreciation for the morning’s unprecedented gathering of “those who are leading the charge” in delivering personalized treatment for autism and other developmental disorders. “In our research, we need to think of autism as a whole body disorder and not just a disorder of the brain,” he said. “And we need to put the individual and their families into the centerpiece of this research.”
Venture philanthropy delivers products and services
Autism Speaks’ Dan Smith discussed the role of venture-capital philanthropy in delivering much-needed services and products to the autism community. Dr. Smith is Autism Speaks’ vice president for innovative technology and president of its not-for-profit affiliate DELSIA (Delivering Scientific Innovation for Autism). Autism Speaks created DELSIA in 2012 to support the commercial translation of scientific breakthroughs and technological advances into products for the autism community. Learn more about DELSIA here.
The revolution driving autism research
With Al Jazeera America correspondent Mary Snow as moderator, the science panelists explored how the revolution in genomic medicine – epitomized by Autism Speaks’ MSSNG collaboration with Google – is deepening understanding of autism and speeding research that can deliver personalized treatments. The MSSNG project (pronounced “missing”) is sequencing the genomes of 10,000 individuals in families affected by autism.
Thomas Insel, director of the National Institute of Mental Health highlighted the federal government’s increased focus on research that can deliver immediate benefits to the autism community. “Some of the things we can do to make a difference right now include early detection, early intervention and making sure we can deliver services that help adults,” he said.
Panelists also included Richard Mohs, Eli Lilly’s vice president for neuroscience clinical development. “I would like people to understand that we shouldn’t be afraid to fail,” he said of the search for new medicines to treat autism’s core symptoms and related health issues. “But hopefully these failures are informative failures.” The “good news,” he added “is that with new technology, finding targets is easier.”
Mary Woolley, president of Research!America, described why her organization’s mission is to relentlessly fight to make medical research a higher national priority. “We speak out in ways that people who work for the federal government can’t,” she said. “They’re constrained as federal employees … but we can say we need a lot more money!”
And panelist Megan Anderson Brooks, of The American Brain Coalition, discussed the coalition’s partnership with Autism Speaks in supporting the 21st Century Cures Initiative.
The morning scientific session was followed by panels on family services and legislative agendas. For coverage of these sessions, click here.