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Summer Update from Autism Speaks President Mark Roithmayr

July 31, 2009

Mark Roithmayr

We are a little more than half way through what has already been a remarkable year for Autism Speaks. It's anything but a quiet summer for our dedicated staff and wonderful volunteers, who are busy on many fronts – from our newly renamed Walk Now for Autism Speaks events taking place across the country, to efforts to include autism insurance reform in federal health care legislation, and preparations for major fall fundraising and awareness events.

As we begin to look ahead to an eventful fall – and, later, our upcoming fifth anniversary year in 2010 – I thought I'd take a moment to share some highlights of what we have accomplished together in just the past six months.  

Science

Autism Speaks is funding over $20 million in scientific research this year, an outstanding commitment despite the difficult economic challenges we are all facing.

Among several important science-related initiatives, Autism Speaks announced a major, new collaborative study that holds tremendous promise for identifying potential genetic-environmental interactions in autism. Funded by a $5 million anonymous grant, this project will expand and link two large-scale, multi-site studies (EARLI and IBIS), investigating genetic and environmental risk factors for autism in 2,000 infant siblings of children with ASDs.

At the International Meeting for Autism Research (IMFAR) this spring, our Chief Science Officer Geri Dawson, Ph.D. introduced Autism Speaks' Scientific Strategic Plan which details our scientific mission and goals for the next three years. It's an exciting and ambitious scientific agenda, and I hope you'll take a moment to read about it. Strategic Plan cover The Autism Genetic Resource Exchange (AGRE) is one of our most important science initiatives – it is making important research possible, and making it happen very quickly. AGRE played a pivotal role in two very exciting genetic studies published recently. One study pinpointed a gene region that may account for as many as 15 percent of autism cases, while the other identifies missing or duplicated stretches of DNA along two crucial gene pathways in almost two thirds of the individuals with ASD studied. Dr. Dawson, who was a co-author of both studies, talks about their significance here.

The Autism Speaks Baby Siblings Research Consortium published a major policy paper on the clinical assessment and management of toddlers suspected of having autism. As new methods for diagnosing autism in babies and toddlers are developed, guidelines like these will be extremely helpful to clinicians and help ensure that young children with ASD are getting the appropriate diagnosis and care. Similarly, the Autism Treatment Network (ATN) is continuing its work on developing guidelines for the assessment and management of gastrointestinal disorders in children with ASD and launched studies on nutrition, sleep disorders and GI disorders this year.

Geri Dawson

The issue of vaccine safety continues to be a topic of discussion and debate within the autism community. Earlier this month, Dr. Dawson and Executive Vice President Peter Bell participated in a National Vaccine Advisory Committee (NVAC) Vaccine Safety Working Group panel, during which they made several recommendations about overcoming gaps in the federal government's vaccine safety science infrastructure. At an Interagency Autism Coordinating Committee (IACC) hearing the same day, Dr. Dawson detailed some of the research Autism Speaks is funding on risk factors for autism. Among other points, she told the panel that although Autism Speaks is currently funding research on vaccines and autism, it represents only about 2% of research funding in 2008. She explained that the research we are funding focuses on identifying subgroups of children with specific medical or genetic conditions who might be susceptible to adverse effects of vaccines, including autism.

I encourage everyone to read the new Interview with Geri Dawson on vaccines – it's important to know where we stand on this issue.
 

Advocacy

Working closely with local volunteers and grassroots organizations, Autism Speaks has played a key role in the passage of autism insurance reform legislation in 10 more states in the first half of 2010 alone. One of those was New Jersey, where our co-founder Bob Wright testified before a legislative committee about the need to end insurers'

Autism Votes discrimination against children with autism. Fifteen states have now passed legislation – we have incredible momentum on our side. For the first time, Autism Speaks launched a national multi-media ad campaign on the need for autism insurance reform. The TV ad, entitled “Neighbors,” depicts the consequences of insurance company discrimination against individuals with autism and calls on the American public to urge Senate Majority Leader Harry Reid and House Speaker Nancy Pelosi to end autism insurance discrimination in the upcoming health care reform legislation.

Our government relations team also worked closely with the new administration and members of Congress to have $211 million appropriated for the Combating Autism Act. Additionally, when Congress passed the President's stimulus package, Autism Speaks science and government relations teams fought to get the NIH to appropriate $60 million in new money for autism research. We are making major inroads to ensure that federal funding for autism begins to rise to a more appropriate level.

Family Services
 

Several wonderful and important new online tools for families and individuals with autism were launched on autismspeaks.org. Community Connections, a monthly feature in our e-Speaks newsletter, offers families and the community the opportunity to share practical tips about meeting everyday challenges. Autism in the Workplace is a unique resource for individuals with

Community Connections Community Connections offered a guides to summer camps autism seeking to gain employment. In conjunction with Snip-Its hair salons, we now offer a marvelous video and training guide that will hopefully make haircuts for kids with autism a less stressful experience. Finally, the Autism Safety Project provides First Responders with information and guidelines for communicating with individuals with an ASD in emergency situations to ensure safe and productive interactions.

Autism Speaks played a leadership role in completing the first phase of the work of Advancing Futures for Adults with Autism, a collaboration of autism organizations that have united to set national priorities, transform public policy and service programs for adults on the autism spectrum. The second phase, a National Town Hall meeting, will take place in November and involve close to 1000 stakeholders in at least 12 locations across the country.

Due in part to the efforts of Autism Speaks' Federal Legal Appeals Project (FLAP), the autism community saw a major legal victory when the Supreme Court reaffirmed a parent's right to due process in securing appropriate education for their child with disabilities. The Court's decision means that parents have the right to sue without having to first “try out” the district's program of services for their child.

Awareness

On April 2, Autism Speaks hosted events around the U.S. to celebrate the second annual World Autism Awareness Day, originally conceived by our co-founder, Suzanne Wright. Events included ringing the opening bell at the New York Stock Exchange, appearances on all three major network television morning shows, a UN panel discussion with the World Health Organization, and an unveiling by Yoko Ono of her art piece “Promise,” which was then auctioned online to benefit Autism Speaks.

Yoko Ono -  World Autism Awareness Day Yoko Ono at the United Nations on April 2 In April, we also celebrated Autism Awareness Month with our wonderful corporate sponsors: Toys”R”Us, TJ Maxx, Modell's Sporting Goods, Lindt Chocolate and Ask.com. Discovery Health ran ads from our enormously successful PSA campaign, promoted our walks and aired specials on autism. The NBA ran PSAs during games aired on TNT.

The latest round of Autism Speaks “Learn the Signs” public service ads, produced in conjunction with the Ad Council and our pro-bono advertising agency BBDO, premiered, featuring professional golfer Ernie Els and singer/songwriter Toni Braxton, both of whom have children on the spectrum.

Autism Speaks was selected for the third year as the honorary title sponsor of the Autism Speaks 400 presented by Heluva Good! Sour Cream Dips & Cheese which aired live on Fox Sports to an estimated six million viewers. In addition, 30 drivers proudly featured the Autism Speaks logo on their cars during the race.

Alpha Xi Delta, one of the nation's oldest women's fraternities, selected Autism Speaks as its national charity and has been using its extensive network of colleges and alumnae associations, 135,000 members strong, to raise funds and awareness.

Chefs Wylie Dufresne of wd-50 and Christopher Lee of Aureole selected Autism Speaks as their charity of choice for Bravo TV's reality show “Top Chef Masters” – another unique awareness opportunity for our cause.

Walk Now for Autism Speaks

Our Walk Now for Autism Speaks program continues to expand across the country, providing more families with an opportunity to celebrate individuals with autism, raise funds to support Autism Speaks' work and increase awareness in their communities. This year's Walks have attracted an unprecedented number of walkers and raised millions to support autism research. I want to thank each and every walker, volunteer and committee member for all your hard work and enthusiasm! You make everything we do possible.

Milwaukee Walk Now for Autism Speaks Toys"R"Us' Geoffrey cuts the ribbon to begin the Milwaukee Walk Now for Autism. Major Gifts

Even in these uniquely difficult economic times, Autism Speaks continues to benefit from the generosity of many individuals, foundations, and corporations who have donated major gifts ($5,000 and higher) to support our work. Among the notable new relationships forged this year is one with Jewelers for Children, the philanthropic arm of the jewelry industry, which added Autism Speaks as one of its primary charities, donating $225,000 to kick off the association. Many people also established legacy gifts by including Autism Speaks in their estate planning.

Looking Forward

The rest of the year promises to be equally busy. Among the highlights: Suzanne Wright will host the second annual UN World Focus on Autism on September 22; the CDC is expected to release its latest figures on the prevalence of autism in America; and the fifth Concert for Autism Speaks will feature a star-studded line-up raising money and awareness.

The long list of accomplishments and victories – both big and small – goes on and on. Each of them is attributable to the commitment and passion of our parents, volunteers and staff – the family of Autism Speaks.

Thank you for all that you do.