Extraordinary measures DVD released

The DVD of “Extraordinary Measures”, the movie based on the true story of Dr. Chen Yuan-tsong’s research on the live-saving drug for Pompe diseases patients, was released in Taiwan. Taiwan Foundation for Rare Disorders (TFRD) and Deltamac Taiwan Co. Ltd. co-hosted a press conference to announce the release of the DVD. Former president of the Academia Sinica Prof. Lee Yuan-tseh, chairman of CMC Entertainment Wong Min-shien, Ministers without portfolio Chang Chin-fu and Xue Chen-tai and several entertainment celebrities attended the conference to show their support. 

The movie is based on John and Aileen Crowley, whose two youngest children have Pompe disease. The father is played by Brendan Fraser. He raises money for research scientist Robert Stonehill, played by Harrison Ford, to form a company to develop a cure for his children. Dr. Stonehill is based on real life of Taiwanese doctor and Academia Sinica scientist Chen Yuan-tsong. 

During the release press conference, Dr. Chen Yuan-tsong, along with his wife and parents, talked about the 15 years spent on developing the drug, Myozyme. Dr. Chen said that he never thought this would become a movie because Pompe Disease is such a rare disease that no one would be interested in. It was even less likely that a superstar like Harrison Ford would be interested. He added that most of the times, all he and his team had were repeatedly failures. When they felt frustrated, they visited these young Pompe patients at the hospital to remind them that the failure to the research team was nothing comparing to what the patients and their families were going through. The drug was later approved by FDA and EMEA in 2006. 

Dr. Chen, who is also the chairman of TFRD, said that Taiwan has contributed to his research in developing Myozyme, in terms of financial support from Taiwanese pharmaceutical corporation, clinical trials on Taiwanese patients and patent on relevant technologies. Vice president of TFRD, Dr. Tseng Min-chieh also indicated that Taiwan has the world’s leading technology and newborn screening mechanism on detecting newborns with Pompe disease, which help Pompe families get necessary medical, social welfares and even financial assistance. Currently, Myozyme is fully reimbursed by Taiwan’s National Health Insurance program with 34 Pompe patients receiving adequate treatment. In addition, TFRD has been subsidizing newborns in low-income and aboriginal families with 150 NT dollars of newborn screening fees per newborn since 2009, to further guarantee that they receive early treatment if a condition is detected through the screening. Up until now, the total subsidy amount has reached 1,741,400 NT dollars. 

To help raise public awareness on rare diseases, CMC Entertainment gave 200 Extraordinary Measures DVDs to TFRD. With Extraordinary Measures not given a cinematic release in Taiwan and could only be seen on DVD, TFRD put three special charity screening at Taipei’s Vie Show Cinemas to share this film with the public and help viewers understand the lives of those with rare diseases. If you’re also interested in the story, go and check out the extraordinary movie.