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😊
三年前，結節性硬化症患者是被遺忘的一群，彷彿是社會上的孤兒，我們幾位家長憑着一股信念，就是為孩子創造一個不一樣的明天！經過媒體報道後，幸運地漸漸得到不同界別的關注😊
2017年，協會第一次義賣利是封籌款，華星冰室老闆民迪義不容辭答應幫忙，除了在店內騰出空間義賣，還憑着他個人網絡，向相熟的藝人推銷利是封！在短短三星期內，為協會籌得50多萬善款，創造奇蹟！及後民迪還成為協會的榮譽顧問，多年來和協會同行，幫忙小眾罕病患者，讓社會大眾看得到我們，讓政府聽到我們的聲音！
2017年2月，協會第一個公眾活動「星夢童謠畫展」是在九展華星冰室舉行，2020年2月1日，下午2:30，協會將舉行祝捷大會，地點亦在九展華星冰室😊歡迎大家一齊參與，分享我們的喜悅！
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!
#華星冰室
#正面推動比一切更有力量
#包容比一切更有力量
#堅持才能看見希望