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Governor Kulongski Visits Set of CBS Films’ ‘Untitled Crowley Project’

WHAT:          Gov. Ted Kulongoski and Oregon Health & Science University's nationally renowned Pompe disease experts Edward Cupler, M.D., and Robert Steiner, M.D., will visit the set and discuss how OHSU and others helped the Office of Oregon Film & Television bring the production of CBS Films' the "Untitled Crowley Project" to Oregon.

The film's producer, Michael Shamberg, and executive producer, Nan Morales, also will be available to answer questions.

OHSU was selected as a film location in part because two of its researcher-physicians are among a handful in the nation treating Pompe patients and collecting data, through basic science research and clinical trials, to better understand the disease and its medical management. Drs. Cupler and Steiner serve as Pompe disease consultants for the film and have cameo roles.

"We are proud that some of our faculty members have the expertise and knowledge to provide technical guidance to the actors and crew – expertise that we hope will translate into a realistic portrayal of Pompe disease and the efforts undertaken to cure it," said OHSU President Joe Robertson Jr., M.D., M.B.A. "We also are glad that our participation in the film's production will raise the profile of Oregon and OHSU, and provide the state with a significant cash infusion."

Melanie Sanders, R.N., B.S.N., C.P.N, pediatric acute care nurse educator in OHSU Doernbecher Children's Hospital, is serving as technical adviser to the film's production crew. Since March, she's worked with Brendan Fraser and Keri Russell to accurately depict hospital care, and home care procedures, for children with Pompe disease, including what should or should not be included in that dialogue.

WHEN:          Monday, June 1, 2 p.m.

WHERE:       Doernbecher Children's Hospital, 3181 S.W. Sam Jackson Park Road 97239

DETAILS:     The "Untitled Crowley Project" is inspired by John Crowley and his family's journey to find a cure for Pompe disease. Starring Brendan Fraser, Harrison Ford and Keri Russell and directed by Tom Vaughan, the film is set to debut April 2, 2010. Michael Shamberg and Stacey Sher ("World Trade Center," "Erin Brockovich"), alongside Carla Shamberg ("Erin Brockovich"), produce through their Double Feature Films banner. Robert Nelson Jacobs ("The Water Horse," "Chocolat") wrote the screenplay, which was inspired by a Wall Street Journal article and subsequent book, The Cure: How a Father Raised $100 million and Bucked the Medical Establishment in a Quest to Save His Children, by Pulitzer Prize-winning writer Geeta Anand.


Pompe disease is a rare, inherited and often fatal disorder that disables the heart and muscles. It is caused by mutations in a gene that makes an enzyme called alpha-glucosidase (GAA). Normally, the body uses GAA to break down glycogen, a stored form of sugar used for energy. But in Pompe disease, mutations in the GAA gene reduce or completely eliminate this essential enzyme. Excessive amounts of glycogen accumulate everywhere in the body, but the cells of the heart and skeletal muscles are the most seriously affected. For more information about Pompe disease, visit the National Institutes of Health Web site:


The Governor's Office of Film & Television has been helping productions find, secure, and utilize our magnificent locations since 1968. Our mission is to promote the development of the film, video, and multimedia industry in Oregon and to enhance the industry's revenues, profile, and reputation within Oregon and among the industry internationally.


Oregon Health & Science University is the state's only health and research university, and Oregon's only academic health center. OHSU is Portland's largest employer and the fourth largest in Oregon (excluding government). OHSU's size contributes to its ability to provide many services and community support activities not found anywhere else in the state. It serves patients from every corner of the state, and is a conduit for learning for more than 3,400 students and trainees. OHSU is the source of more than 200 community outreach programs that bring health and education services to every county in the state. For more information about OHSU, visit:

  • OHSU Pompe Disease Research and Treatment OHSU is home to the largest Pompe research and treatment center on the West Coast.
  • In 2004 OHSU researcher-physicians Sue Ann Smith, M.D., and Robert Steiner, M.D., participated in one of the first Pompe disease research studies. The study evaluating the effects of enzyme replacement therapy on infants with the disease. Enzyme replacement therapy was subsequently approved by the FDA in 2006.
  • Dr. Steiner chaired the American College of Medical Genetics working group on diagnosis, screening and management of Pompe disease that published diagnostic and management guidelines. John Crowley was a committee member and co-author with Steiner on the report.
  • In 2005 OHSU's Pompe research team participated in a multi-center clinical trial that found a new enzyme replacement therapy was effective in treating Pompe disease in adults.
  • In 2006 OHSU physician-researcher Edward Cupler, M.D., participated in an international consensus meeting in London to develop methods for a laboratory diagnosis of Pompe disease.
  • In 2007 Dr Cupler participated in the American Association of Neuromuscular and Electrodiagnostic Medicine's workgroup to develop diagnostic criteria for late-onset Pompe disease.
  • Drs. Cupler and Steiner currently are participating in a new clinical trial sponsored by Amicus, John Crowley's company, to determine the safety and tolerability of three different doses of the drug AT220 in people affected by Pompe disease.
  • Today, Drs. Steiner and Cupler are among a handful of researcher-physicians nationwide with the expertise to provide comprehensive diagnostic and management care to patients with Pompe from infancy through adulthood. Together, they have more than 20 years' collective experience in caring for patients with Pompe disease.
  • Drs. Cupler and Steiner also are among a select few in the nation collecting data, through basic science research and clinical trials, to better understand the disease and its medical management.
  • Drs. Cupler and Steiner currently participate in the largest worldwide registry of patients with Pompe disease. Dr. Cupler is one of five individuals on the North American Board of Advisors to the Pompe Disease Registry. This group steers data collection and management for infantile and late onset Pompe disease.
  • Today, a simple blood spot test in newborns can determine whether a child has Pompe disease; however, the Pompe disease test is not included in most state newborn screenings.
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