The Oriental Pearl Tower lights up for them tonight
On June 21, the 22nd "Care for ALS" event with the theme of "Thawing the ALS and Helping the Powerless" was held as scheduled. The love from organizations and individuals from all walks of life once again lit up the Oriental Pearl Tower.
Accompanied by their families, ALS patients "walked" the red carpet to celebrate their own festival. "Red carpet, autographs, taking photos with family, cameras, mobile phones, drones, I have never had so many cameras pointed at me, I feel so happy!" Chen Yang said excitedly. Situ Guozhen confessed affectionately: "My husband, you have worked hard, thank you for your meticulous company and care. We have been together for forty years, and the love in this life will be repaid in the next life."
Although they have some difficulty in signing and writing, they write wonderful stories in life: Feng Jinyuan has never been to school, but he taught himself Japanese and scored 20th in the East China region, translated and published 4 books, and started game design. The first project has been sold and the investment has been recovered, and the second project has also been launched on the market; Tang Xu found an IT job after graduating from Shanghai Maritime University, and developed the barrier-free Little Bee APP to help people in need and give back to society.
The founder Zhu Changqing was the last to be pushed onto the stage, and then signed autographs and took photos with fellow patients. Jia Jia, a fellow ALS patient, sang the song "At Least I Have You", expressing the voice of ALS patients: Thank you to every caring person and strive to embrace the future.
There was also an iceberg standing at the scene, symbolizing the barrier for ALS patients to integrate into society. When the guests, volunteers and patient representatives broke the ice together, what was broken was not only the ice that bound ALS patients, but also the many obstacles to integration into society. The iceberg contained snacks made by volunteer Zhao Yulan - Internet celebrity cookies. When the iceberg melted, these nutritious cookies were scattered to all the guests present. ALS representatives took off their raincoats and distributed cookies to caring people at the Oriental Pearl Tower. These bags of cookies imply that the seeds of love will take root, sprout, bloom and bear fruit in people's hearts.
At 19:00, the Oriental Pearl Tower lit up for World ALS Day, and a promotional video introducing the ALS situation and MDACHINA was played on a loop on the Citibank big screen on the Bund, Shanghai's landmark media, the "window of the city". At the same time, the Oriental Pearl Tower's mobile TV broadcast the promotional video on more than 30,000 viewing terminals such as buses, buildings, and rail transit; the information gardens of various communities in Shanghai also broadcast the promotional video simultaneously, so that more people can pay attention to ALS and learn about World ALS Day.
At the caring event, experts from Yueyang Hospital, Huashan Hospital, Jiaotong University Medical Genetics Institute of Children's Hospital, Huashan Hospital, Research Department of Fudan University School of Medicine, East China Normal University, Nursing Department of the Sixth People's Hospital, Zhongshan Hospital and other institutions gave lectures in turn.
Experts will give special presentations on the research progress of integrated Chinese and Western medicine treatment of neuromuscular diseases, some new drugs on the market, and explain the knowledge and latest research and development progress of genetic testing and genetics of neuromuscular diseases from the perspectives of clinical, medication, genetics, nursing, rehabilitation, and psychology.
Jin Li, deputy to the National People's Congress and president of Fudan University, has been paying attention to the rare disease group. At this year's National People's Congress, he once again called on the civil affairs department, the Disabled Persons' Federation, communities, hospitals and other departments to strengthen the social support system for this group. Wu Ji, director of the Second Rehabilitation Department of Tianshan Hospital of Traditional Chinese Medicine, received a response from the relevant departments to the CPPCC proposal on ALS and rare diseases, and opened ALS and rare disease rehabilitation outlets.
This year's volunteer team is also growing. The Shanghai Zique Emergency Rescue Team is a volunteer team that has deep roots in the local area, responds quickly across the country, and widely participates in international cooperation and exchanges. This year, it joined the caring volunteer service for the first time. Shanghai International Studies University provides translation services, volunteers from Shanghai Second Polytechnic University provide skills education, and volunteers from Fudan Nursing School provide door-to-door nursing guidance. Volunteers from Shanghai University of Traditional Chinese Medicine provide door-to-door rehabilitation massage for patients, once a week without interruption regardless of the cold or hot weather.
In response to the call for this charity event, from 18:00 on the 18th to July 2nd, Johnson Taxi deployed more than 8,000 taxis, joined hands with Volkswagen and Blue Alliance, and used rear window car projection equipment to launch public service advertisements for the "June 21 World ALS Day" event, spreading love and charity to the streets and alleys of Shanghai, encouraging the public to pay attention to and help this special group of people with ALS. The Shanghai Johnson Lei Feng Team uses barrier-free vehicles to provide pick-up and drop-off services for patients regardless of wind or rain. Beijing LiLiCheng Media Co., Ltd., a subsidiary of Didi, also invested tens of thousands of car screens to play promotional videos about caring for and helping people with ALS. Didi's Shanghai special car team provides barrier-free travel services for ALS families participating in the "If I Can Walk Three-Day Summer Camp".
According to reports, the "Care for People with ALS" campaign was initiated by the Evergreen Care Fund and co-organized by dozens of units and companies including the Shanghai Spiritual Civilization Office, Shanghai Charity Foundation, Shanghai Disabled Persons Welfare Foundation, and Yan Baohang Social Welfare Foundation.
