Photo courtesy of Shanghai Education TV, the same below
Oriental Net reporter Liu Yilin reported on February 24: February 28 this year is the fifteenth day “International Rare Disease Day”, this year’s theme is “Share Your Colours”. On the afternoon of February 24th, the “Help Girl” 2022 “Love · The Temperature of Shanghai” public welfare evening “Born Rare , live a wonderful life” to complete the recording.
33-year-old Jin Sheng has type I diabetes. Although in the popular impression, diabetes is quite high in my country, we learned through interviewing Jin Sheng that the incidence of type I diabetes is only two per 10,000, which is a veritable “rare disease”. As a “regular visitor” of the Children’s Hospital Affiliated to Fudan University since he was a child, Jin Sheng has established a deep friendship with the angels in white. He actively joins the ranks of volunteers to help young patients who are suffering from the same affliction face up to their disease and build confidence. In 2019, he simply resigned from his job and established the “Little Candy Man” charity organization to provide services for children with type I diabetes and their parents, provide psychological counseling, and provide nursing advice.
Compared to many patients with severe rare diseases, Jin Sheng feels that he is “lucky” enough to do It is to become a role model for children, and to tell everyone with their normal life: patients with rare diseases can also have a wonderful life. At the scene of the program, Ma Xingfa, Secretary of the Party Group of Shanghai Association for Science and Technology, presented the flag to the newly established Shanghai Science and Technology Volunteer Service Team for Rare Disease Prevention and Control, hoping that more people would participate in the voluntary service of rare disease prevention and treatment.
In order to help the society understand rare diseases, listen to the voices of rare disease patients, and help the cause of rare disease prevention and protection, not long ago, The organizers invited Luo Wei, a young composer and musician from the healing department, and a famous young lyricist to promise to create a public welfare theme song for the prevention and treatment of rare diseases. The launch ceremony of the rare disease prevention and treatment theme song “Rare” was held at the party. Young singer and Sunshine Popular Science Public Welfare Ambassador Zhang Fantao used his singing to convey the life wishes of rare disease patients who are eager to understand and face the world with a smile.
The party also held a signing ceremony for the joint construction of the four parties. The CPC Shanghai Education TV General Branch Committee, the CPC Shanghai Association for Science and Technology Second Branch Committee, and the CPC Shanghai Science Popularization Center Branch Committee will join hands with the Shanghai Rare Disease Prevention and Control Foundation in the future to jointly support the prevention and control of rare diseases. cause.
Shanghai Education TV “Help “Girls” column 2022 Love Shanghai’s temperature charity party “Born to be rare, live a wonderful life” will be broadcast on February 27, 2022 at 19:30 (premier) and February 28, 2022 at 21:15 (replay).
The online broadcast time is: Shanghai Education TV WeChat video account at 20:00 on February 28, 2022.