Why Patient Advocacy Matters
Benjamin Stecher was born in Nairobi, Kenya and grew up just outside Toronto, Canada. He studied history and philosophy at the University of Guelph, but as soon as he graduated he took off and went to live and work as a teacher in South Korea for nearly three years while traveling the world. He moved to Shanghai, China at 26, spending one year at Jiao Tong University in a Chinese language program before being hired by Chinese education company, San Li.
Benjamin was diagnosed with Parkinson’s disease at the age of 29 and some years later he left China in order to learn how to better manage this disease and see what future therapies were on the horizon. Since being diagnosed with Parkinson’s disease, Benjamin has met leading researchers in the PD field. He is now a prolific author and is actively involved in PD research advocacy. He is the founder of Tomorrow Edition (tmrwedition.com), co-founder of the Parkinson’s Research Advocacy Group (prag.site), and patient advisor to the World Parkinson’s Congress.
Presentation of Parkinson Luxembourg Asbl: their objectives and activities
Parkinson Luxembourg Asbl, founded in 1991, is a is a non-profit organization with multiple objectives; inform the general public and patients about Parkinson’s disease; support patients with the disease and their families to improve their quality of life; support research on Parkinson’s disease. Specifically, the association brings together affected patients and their accompanying person in order to promote exchange and sharing of experiences and knowledge. On top of encouraging people to participate in various activities to prevent social isolation, the association develops programs to raise public awareness of PD and encourages a continuous dialogue between researchers and affected people in order to increase education on the development of PD management.