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From Awareness to Action
Editors’ Note
Bob Wright serves on the board of directors of the Polo Ralph Lauren Corporation, Mission Product, LLC, EMI Group Global Ltd., and AMC Networks Inc., and is a Trustee of the New York-Presbyterian Hospital. He is also Chairman and CEO of the Palm Beach Civic Association and Senior Advisor of THL Capital. Wright served as Vice Chairman, General Electric, and President, CEO, and Chairman of NBC and NBC Universal from 1986 to 2007. Wright had one of the longest and most successful tenures of any media company chief executive, with more than two decades at the helm of one of the world’s leading media and entertainment companies.
In 2005, Wright and his wife Suzanne co-founded Autism Speaks, the leading autism science and advocacy organization dedicated to funding research and raising public awareness of autism. In recognition of their outstanding achievements in this area, Suzanne and Bob Wright received the first-ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory and in May 2008, they were honored in Time Magazine’s 100 Most Influential People in the World issue for their work with Autism Speaks. In the past couple of years, the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University, and UMass Medical School. Wright is a graduate of the College of Holy Cross and the University of Virginia School of Law. He and Suzanne have three children and seven grandchildren.
Organization Brief
Autism Speaks (www.autismspeaks.org), founded in 2005 by Suzanne and Bob Wright, is the world’s leading autism science and advocacy organization dedicated to funding research into the causes, prevention, and treatments for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Was it difficult getting the corporate market onboard to support Autism Speaks?
Toys“R”Us is our largest sponsor and their employees and customers are the ones that create the positive connection. T.J.Maxx has partnered with us for eight years and White Castle has come on significantly in the past couple of years, also due to positive feedback they get from their customers and employees. Dollar General is another wonderful partner. But it’s not easy to get these corporate associations off the ground.
I would like to see more corporate support from banks and financial institutions. We have more than 80 walks in the U.S. with more than 400,000 participants. That opens the opportunity for exposure in 80 major metropolitan markets in the U.S.
We have to have a partnership with the communities, but also with the media in those communities in order to generate awareness. We need to have a partnership with the political forces in the community, because eventually, we will need resources or want to integrate some of our activities with government-sponsored events.
After creating Autism Speaks, have things developed as you had hoped they would?
Our initial focus was to create awareness of what autism is and its prevalence, and we’ve accomplished that. We have received $316 million worth of free media coverage through our Ad Council partnership, and our new campaign is switching from awareness of autism to focusing on diagnosis and treatment; we’re sure that we can measure that impact over time. The awareness has enabled us to raise money to fund research, advocate for our community, and provide resources and tools for the families we serve.
In addition, we have raised more than $300 million on a gross basis since 2005. We try to measure our success in terms of leverage – for every dollar we raise, we try to get $9 worth of metrically managed money out of it – so about $2.6 billion is the impact we’ve had from the $300 million we’ve raised.
On the science side, we’ve been able to fund $173 million in scientific and medical research; we just funded $13 million of grants. We’re increasingly focusing on translational research, taking it from the lab bench to the bedside.
We have the Autism Treatment Network, with 17 medical centers around the U.S. that serve 22,000 families annually who have autism. We’re working to get them to agree on protocols so we can effectively translate those 17 institutions into hundreds by having them do the same things.
We now have a large social media network of a million followers. Last year, we played a key role in securing the three-year extension of the Combating Autism Act, accounting for almost $700 million in new federal autism funding.
Twenty-nine states have passed insurance reform bills because previously, there was no insurance coverage for autism therapies; another 10 have bills in their legislatures. We’re now working to get the federal government to jump on it because they’re the largest employer in the U.S.
We have a bill in Congress that would allow the kids of retired military personnel to get full benefits for autism; we’re also trying hard to pass the ABLE Act, which would enable families to save tax-free to provide care for a loved one with a disability. Our family services team has created valuable tool kits for parents, grandparents, and siblings. Our online autism video glossary shows how various treatments are supposed to be done and what the results are supposed to be so parents have something to compare against.
Our Light It Up Blue campaign is lighting up buildings around the world every year on April 2nd to celebrate World Autism Awareness Day, which is now officially sanctioned by the UN.
Around the world, we have more global impact than when we started. When you’re outside the U.S., the World Health Organization is the total guide to medicine. They are supported by the UN and they recognize autism and are very helpful. They’re looking for low-cost ways to provide diagnoses and intervention in countries that don’t have the resources.
Will there come a time when you will feel you’ve done what you needed to do?
Maybe for me, but not for autism because it’s so far behind as a condition that needs to be addressed. The total cost of it is astronomical in terms of the weight on society and the unrealized potential and loss of productivity of many people who have autism. This is a national public health crisis. We have to fully understand the cause and develop the treatments, medicines, and therapies to reduce or eliminate the aspects it presents. That is coming, but we only started a few years ago.
We would like to see the age of diagnosis drop dramatically. We now know that it’s possible to screen for autism at one year of age and interventions can begin immediately. Treatments can reduce the impact of autism in younger children and get them into a school grade at their age level with help. The average age of diagnosis is still close to five years old, which is unacceptable.
We’ve made tremendous progress, but there is a long road ahead.•