協會經過三年的努力，爭取TSC 患者藥物，mTOR 抑制劑(Afinitor), 終於傳來好消息：抽筋適應症被醫管局納入撒瑪利亞基金的資助！這是協會爭取藥物上一個重大的里程碑😊
After 3 years of advocating for mTOR inhibitor (Afinitor) to be listed as subsidized drugs, we are finally achieved our goal! Individuals with TSC-associated seizures are now eligible for this subsidized treatment under the Samaritan Funds.
Just three years ago Tuberous Sclerosis Complex (TSC) patients were nearly forgotten in Hong Kong. A group of parents of children with TSC decided to raise awareness for this rare disorder. They wanted to create a different kind of future for their children. Through fundraisers and media campaigns, they started to revive social interest in TSC.
The first Chinese New Year Red Pockets Fund Raising sale took place in Chrisly Cafe in 2017. Mr Swadiq Khan provided tremendous support to us, not only that he let us sit multiple collection boxes in his restaurants, he also helped us to raise more than 50 thousand Hong Kong dollars amongst his social network for our Association within 3 weeks. Mr Swadiq Khan also became one of our honorary advisers, assisting our Association in getting our voice heard!
It was February 2017 that we held our very first fundraising event “Our Colorful Stories” in the Chrisly Café at Kowloonbay International Trade & Exhibition Centre. And on February 1, 2020, 2:30 pm, we look forward to you all joining us for the joyous celebration in the same place!