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Calls to Action

The ‘New' Autism Speaks Meets in DC

Staff, Volunteers Gather in First Post-Merger Leadership Meeting
April 23, 2007

Robertson, Roithmayr, Marino

Staff and volunteers mingled throughout the three-day gathering. Shown here are Mark Roithmayr, president of Autism Speaks (center) with New England Chapter board member Sammi Robertson (left) and Southern New England Co-Chair Rose Marino (right).

Nearly 200 Autism Speaks staff members and volunteers met in Washington, DC, for the organization's annual leadership conference April 1-April 3, the first since the recent merger with the National Alliance for Autism Research.

National and regional staffers, walk chairs and key volunteer leadership were on hand from around the United States and overseas to hear the group's leadership discuss accomplishments of the past year and plans for the year ahead. Grassroots activists also attended a series of training sessions ranging from the basics of a successful walkathon to how to best work with the media.

More than 90 volunteers and 30 staff were also planning on remaining in the nation's capitol for an extra day for a series of visits to Congress on April 4 to lobby on autism issues.

'The Entire Landscape Has Been Transformed'

Suzanne and Bob Wright, co-founders of Autism Speaks, kicked off the annual meeting with keynote remarks at an April 1 Awards Dinner. They used the opportunity to acknowledge the tremendous achievements of both Autism Speaks and NAAR, to recognize the importance of the local efforts of walk volunteers, and to express a vision for the "new" Autism Speaks.

Suzanne Wright began by noting that "the entire landscape of autism has been transformed" since NAAR was founded 11 years ago, and that this was a testament not only to NAAR's founders, Karen and Eric London, but also to "the incredible energy and dedication of all the NAAR volunteers." She added, "The growing good of the autism community is dependent on the contributions of every individual involved in a walk ... Collectively, you are making an incredible difference."

Bob Wright discussed the merger between Autism Speaks and NAAR as a "new beginning," also emphasizing the critical importance of raising awareness and dollars on a local level in every community across the nation as well as internationally. "One dollar at a time ... one volunteer at a time ... one child at a time ... We are in this together, and together we will make a difference."

The Focus is Science

Autism Speaks President Mark Roithmayr and Executive Vice President Glenn Tringali echoed that sentiment in an April 2 discussion of the organization's future, emphasizing the growing millions of dollars the two organizations will jointly put into medical research. Said Roithmayr: “The focus is on the science and how to put together a full complement of research to beat this thing.”

Grassroots attendees were later able to discuss cutting-edge research issues with leading scientific and medical experts who are members of Autism Speaks new science advisory panel. Among them were Dr. Emanuel DiCicco-Bloom, Dr. Susan Hyman, Dr. Barry Gordon, Dr. CT Gordon, and Dr. Marshalyn Yeargin-Allsopp. Participants also received briefings on Autism Speaks' research program from Chief Science Officer Andy Shih and Paul Law of Kennedy Krieger Institute, among others.

Dr. Eric London, Autism Speaks board member and member of the Scientific Affairs Committee, noted some improvement over time in federal funding set aside to research autism. But he warned that several key programs are either only partially funded or under threat. He also called for engaging educational institutions in autism research, as well as bringing basic research scientists into the study of autism treatments.

Dr. Gary Goldstein, who chairs the Scientific Affairs Committee, called for more comprehensive care-and-research centers, and more trained professionals in the field. “I've had conversations with hundreds of parents [and there is a] very serious deficiency in being able to get to experts right away. … There are not enough expert people out there, even if you can pay for it,” he told the group.

PSAs, Walks Raise Awareness

Achieving greater awareness of autism among the general public is a central tenet of the organization, and Senior Vice President Alison Singer outlined a major public service advertising campaign to do just that. The TV, radio, web and print campaign, prepared and distributed in cooperation with the Ad Council, will launch April 6 to drive home the message that the odds for an autism diagnosis are startlingly high. Singer screened a series of striking TV spots that will be aired on stations across the country over the next several years.

Also raising awareness of the organization's work are its 50-plus annual walks. At the April 1 awards ceremony, some of the biggest fundraisers were honored by Lisa Gallipoli, national walk director.

Gallipoli presented awards to the top fundraising region (New England, which raised $1.56 million), to the highest fundraising walk (Long Island, which raised $1.2 million), the greatest percentage growth (Pittsburgh, up 29 percent to $616,000 from 2004), to the top inaugural fundraising walk (New York City, which raised $331,000) and to the top fundraising walk team (Team Tyler, Long Island, which raised $131,500).

The awards dinner, which was punctuated by standing ovations, good-natured ribbing and heartfelt tears, also presented honors for the First Annual Ragan Baker Award to the highest fundraising school in the new Kicks for Autism Research (the Salt Lake City ATA Black Belt Academy, which raised $22,000). Corporate partners Modell's, Build-a-Bear Workshop, and TJX Companies were honored as well.

In a moving moment, Karen London presented the 2006 Scientific Service Award to Dr. Susan Hyman, a member of the Scientific Affairs Committee. Hyman is London's former roommate who years later first diagnosed her son Zachary. The two tearfully embraced as London presented the award.

The awards dinner concluded with the London Awards, named for NAAR's co-founders. This year's awards were presented to Frank D'Amico, co-chair of the Gloucester County, N.J. walk, who was touted for arranging innovative mass mailings to promote the walk, and to Sammi Robertson, a member of the New England Chapter Board of Directors, who was honored for her fundraising work in that region, including the comedy fundraiser “A Funny Kind of Love,” which raised $60,000 this past Feb. 14.