A Doctor, a Student, and a Heart for China
This last weekend at the Annual Narcolepsy Network conference in MN, I had the privilege of hearing about the plight of people with narcolepsy (PWN) in other countries. Prof. Mignot, arguably the world's leading authority of Narcolepsy revealed in his opening address some frightening facts about PWN in China. Not only is the incidence of Narcolepsy there significantly higher than in other countries, but those suffering with the crippling symptoms of Narcolepsy do not have access to the treatment they need.
In other words, they don't have Xyrem--a first line medication prescribed to manage disrupted nighttime sleep, excessive daytime sleeping and cataplexy.
Prof. Mignot went on to show footage of children in China who cannot walk independently due to the severity of their symptoms. And, being more than a leading clinician and researcher in his field, he's trying hard to change their lives, just as he's changed ours. So the humble guy gave up the platform for Taylor Li, a student at USC here in LA and founder of the Chinese Narcolepsy Association.
Through a 3-month campaign led and conducted by Taylor earlier this year, Narcolepsy awareness in her home country rose from around 8000 to more than 20 million. Such is the powerful combination of talent, and effective networking on social media. She also founded Echo (Huixiang) in 2015, a mobile App that connects young people with similar dreams and encourages them to inspire each other along their way. And I should probably mention that she does all this whilst managing her symptoms of Narcolepsy.
What an incredible young woman!
Taylor hardly needs my endorsement but I am delighted to share this amazing video clip she showed us this weekend that is changing the face of Narcolepsy awareness around the world. It's kid friendly and says in a minute what it takes the rest of us to explain in about 30.