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於2020-02-24 09:05:00發表 (閱讀次數:540)
《Silver Linings Playbook of Rare Disease》 Released

Heart-touching DocumentariesSilver Linings Playbook of Rare Disease Released

"Silver Lining Playbook of Rare Disease", a series of documentaries, was released in 2019 and 2020. Produced by Taiwan Foundation for Rare Disorders (TFRD), Taipei City Councilor Qin Hui-Zhu, and other foundations and company. The documentaries include five themes, and each film describes different stories of rare disease patients.

The first two documentaries was premiered on August 22th, 2019. “Perfect Girl” is a story of a girl who suffered from Achondroplasia; and “My Iron Grandma” is about the struggle of a family with Glutaric Aciduria.

These documentaries are produced by Taipei City Councilor Qin Hui-Zhu, TFRD, Yuanta Cultural and Educational Foundation and Zhan Tengguan Star Art Culture Co. together, they hope to convey the hidden sufferings of rare disease families to the public. Moreover, they expect these charity documentaries can bring popular science value and address social issues to the society.

In fact, producer Councilor Qin, is a mother who has been taking care of her Prader-Willi Syndrome son for many years. The documentary’s theme song “We are alike” was written by a folk song band “Timeless Voice”, who perform this song with Rare Daddy Chorus.

Six months later, TFRD worked with Councilor Qin, Farglory Foundation and Zhan Tengguan Star Art Culture Co. again to produce three more documentaries. The first one “Rare Diseases Warriors” describes that the parents focus too much on their Mitochondrial Defect younger son, and alienate the other son unconsciously. Fortunately, they mend their fences by playing baseball. The second one “Go~ My Boy!” portrays the story of a Williams Syndrome patient whose mother suddenly passed away. Therefore, his sister carries the burden to take care of him. Other Rare Mothers also support them to move on, showing the power of love. The last one “One Hundred Thousand Volts of Love” tells the story in a relaxing tone of three optimistic mothers who make their best efforts to establish Taiwan Dravet Syndrome Association for the suffered children.

In the future, in order to enhance the acceptance and understanding for rare disease children in campus, and to create friendly learning environment, the documentaries will be well publicized all over schools along with learning sheets, care brochures and leaflets with the help of Department of Education, Taipei City Government, and Taipei City Alliance of Presidents of Parents Association.

In 2019
◎《Silver Linings Playbook of Rare Disease》“Perfect Girl https://youtu.be/F_OBJuMN6nQ
◎《Silver Linings Playbook of Rare Disease》“ My Iron grandma https://youtu.be/x304wqa-luQ
theme song we are alike https://youtu.be/h3-mwdjYXIU 

In 2020
◎《Silver Linings Playbook of Rare Disease》“Rare Diseases Warriors  https://reurl.cc/VaG1DQ
◎《Silver Linings Playbook of Rare Disease》“Go~ My Boy! https://reurl.cc/EKqRRg
◎《Silver Linings Playbook of Rare Disease》“One Hundred Thousand Volts of Love https://reurl.cc/72Zpp1
theme song Fight out https://reurl.cc/L1v43y

Translator: Ellen Kuo (OI), Reviewer: Joy Yin