About SARRC

History

This history of SARRC begins with two dedicated mothers of children with autism and a doctor who cared for their children. The threesome met routinely to share each other’s tears, laughter, setbacks, triumphs and hopes. The group quickly expanded and outgrew their table at the Paradise Valley coffee shop where they met. It was here, in the minds of a determined few - Raun Melmed, Denise Resnik and Cindy Schneider - that SARRC took flight.

Humble beginnings

The need for such an organization emanated from the frustrations that came with the lack of services and support for families affected by such a harrowing and perplexing disorder, in addition to the numerous questions these families had and the conflicting messages they were receiving from healthcare providers. Operating out of home, business and medical offices, SARRC began as a virtual research center setting its sights on not only answering these questions, but questioning the answers. It offered insight, empowerment and comfort to parents searching for information and hope and was quickly embraced by the community.

Over the course of the next 18 months, SARRC quickly gained momentum expanding its reach, embarking on research projects and finally finding a place to call home. In 1998, SARRC opened the doors of its first 1,800-square-foot facility at 10th Street and McDowell Road, and the co-founders haven’t looked back since.

It only took another 18 months for SARRC to outgrow that space and soon the facility was expanded, adding 4,000 square feet. As its physical structure took shape, so too did its internal structure; a mission statement was developed, core values were defined and early intervention programs were mapped out. For SARRC, the guiding principles still ring true today:

Advocate the need for research into autism.
Educate families on best practices and evidence-based therapies.
Obey medicine’s cardinal rule regarding new interventions, “First, do not harm.”

By 1999, SARRC had developed a series of educational workshops for parents, educators and students; began worldwide collaborations; established a database of families; and participated in the first clinical trial of secretin in the treatment of autism.

By 2002, SARRC had rolled out the FRIEND™ program, which encourages autism education and classroom sensitivity training for typical peers in the school setting, and launched HabStart, a program providing therapists and paraprofessionals with hands-on autism training.

Also in 2002, SARRC’s monthly grandparents support group was founded by Kathy Bosco. The group, boasting an initial membership of six, began as a place where grandparents could learn about autism and support their children and grandchildren through an autism diagnosis. Today, more than 300 grandparents participate in the group, which has grown into SARRC’s dependable cadre of hands-on volunteers and advocates. “When we began coming to SARRC it was for support and information,” Bosco says. “Now we are part of SARRC because we are able to give back and support other families and the staff who helped us.”

Fulfilling a growing need

During the first several years, SARRC experienced an influx of community support and dramatic increase in the number of families seeking its services. During its fifth year of operation, more than 1,800 parents, paraprofessionals, teachers and therapists enrolled in the center’s workshops and training sessions. Families from France, China, Peru, England and Australia came to Phoenix to enroll in programs at SARRC. While some parents called only to have a few questions answered, many formed long-term bonds with the exceptional staff and volunteers at SARRC, finding hope and solace in the Center. Throughout SARRC’s 10 years, valued relationships have formed among mothers, fathers, siblings, grandparents and other members of the community.

Stephanie and Socrates Papadopoulos were introduced to SARRC more than three years ago, when one of their triplets, Eleni, was diagnosed. The Papadopoulos family has enrolled Eleni in just about every program SARRC has offered. Today, Eleni is 5 and has made tremendous progress. Stephanie says they can’t imagine living somewhere without the type of support they’ve found in SARRC.

“Last August, my husband was promoted and we were ready to move to Washington, DC. In all of the surrounding states, there was nothing even comparable to SARRC,” she says. “In the last 10 years, our state has gone from having nothing, as far as autism awareness is concerned, to becoming one of the top centers in the country for resources that help families like mine.

“SARRC is doing more than just offering education,” she adds. “It’s advocating for our cause. It’s offering programs and therapies. It’s bringing in the best and brightest people. It’s doing the research. It’s not missing anything. And I want to do everything I can to help this organization that has helped my daughter and so many others.”

The next chapter

SARRC’s next move was a big one. When it relocated in 2005 to the Campus for Exceptional Children, a facility at 18th Street and Van Buren specially designed to address the needs of children with autism and their families, it opened its doors not only to 18,000 square feet, but to a whole new set of services it would be able to provide with the added space.

Since the transition to the new Campus, SARRC continues to build its services, which include early intervention programs, education and outreach initiatives, vocational and life-skills opportunities and various therapies. With the addition of the Vocational & Life Skills Academy and planned residential community, SARRC will offer a comprehensive scope of services to meet the needs of individuals with autism throughout the lifespan.

“It’s important to realize that with therapy comes improvement,” Papadopoulos says. "Sometimes people get depressed and think this is such a dark story, but there truly is a brighter side. There is hope.

“We’re still saving for Eleni’s college and I think she will be able to hold a job someday. Funding the research for program development and toward finding a cure will clearly have a huge impact. Eleni wouldn’t be where she is today without SARRC’s programs and the therapy she receives.”

Forging collaborations

To cultivate the research activities and program development, SARRC has worked passionately to pioneer a model that engages families, community leaders and the professional community. This spirit of collaboration has been evident since the Center’s inception 10 years ago. Relationships have been formed with the Translational Genomics Research Institute (TGen), National Institute of Mental Health (NIMH), Autism Speaks, Cure Autism Now, the M.I.N.D. Institute, the Organization for Autism Research, Arizona State University, the University of Arizona, Northern Arizona University and numerous other autism organizations, universities and government entities.

"As director of the NIMH, which leads the federal government’s coordinated approach for autism research, I have been inspired by the commitment and the expertise of groups like SARRC that have often led the way,” says Thomas Insel, MD, director of the National Institute of Mental Health, which is part of the National Institutes of Health.“Through alliances with TGen, Autism Speaks, NIMH and others, SARRC has helped families with autism to begin to answer the urgent questions about this disorder: What causes autism? What are the best treatments? How can we develop a cure? These are the driving questions for all of us. To answer these questions, we will need a village of families, private organizations and public funding all working together. In only 10 years, SARRC has become an important leader in this village, helping all of us to focus on the most important questions and ensuring that we will have the partnerships to provide the most helpful answers.”

Building support

SARRC has experienced tremendous support on multiple levels from various members of the community, which has allowed the nonprofit to grow and become what it is today. For example, the real estate community played an integral role in the build out of the Campus for Exceptional Children. Funding from generous individual donors, trusts and foundations, including the Don & Sybil Harrington Trust, Virginia G. Piper Charitable Trust, Nina Mason Pulliam Charitable Trust, Kemper & Ethel Marley Foundation, Noah’s Family Foundation, Opus Foundation and The Helios Foundation, has provided sustained momentum for many of SARRC’s programs and services.

“SARRC has progressed at light speed from its inception to its arrival at the Don & Sybil Harrington Campus for Exceptional Children, which marked a dramatic step forward for SARRC,” says Kathy Hancock, SARRC board member and executive director at Fennemore Craig. “It’s amazing to see what a devoted group of people can accomplish, and SARRC is blessed with a tremendous group of supporters that includes parents, grandparents, teachers, business leaders, government officials...it’s truly inspiring.”

And the inspiration continues, not only within the community, but with the continual expansion and improvement of SARRC’s services. Over the past decade, SARRC has watched its young children mature into teenagers, and the realization set in early on that an entire generation of individuals with autism would soon be entering adulthood, requiring exceptional care.

“Kids with autism grow up to be adults with autism,” says Denise D. Resnik, co-founder of SARRC and board chairman from 1997-2007. “This isn’t just a childhood disorder and it doesn’t only affect the individual who is diagnosed. It impacts everyone in the family. What you do, where you go, what you eat, how you sleep and how you feel largely depends on your family member with autism. SARRC has empowered my husband, Rob, daughter, Ally, and our extended family to be able to navigate the journey that is autism and give back to the thousands of families who are facing similar situations.”

SARRC co-founder and medical director Raun Melmed adds, “As SARRC celebrates its 10th anniversary, we’re hopeful that within the next decade, the medical mysteries surrounding autism will unravel.”

Article originally published in Outreach magazine, Spring 2007.