Baisheng Ning 宁栢晟
Organization: FSHD-China Patient Advocacy and Support Organization
City and country of residence: Mudanjiang City, Heilongjiang Province, China
Education (What you studied. What you liked... or hated!): I have studied psychology systematically, and I am good at cooperating and communicating with people from different industries. I like to share ideas with others and help solve problems.
Profession: Full-time work for FSHD-China
Hobbies and skills: I really enjoy reading psychology books and watching sci-fi movies. I used to be very good at volleyball and ice skating, but I had to give up both sports because of FSHD. The city where I live has long winters, so I can skate outside.
Relationship to FSHD (patient, family member, etc.): I was diagnosed with FSHD when I was 13 years old. No one in the family has FSHD and currently lives with father. I established the FSHD-China patient advocacy organization in 2017. I hope to raise awareness of FSHD disease in China, accelerate FSHD medical research, so that FSHD patients no longer face the disease alone.