Junko Shiozawa, Advisory Board Member to CureDRPLA, has created a community of Japanese families affected by DRPLA. They offer peer support to each other and host online meetings. Since DRPLA is more common in Japan, it was important for us to create a Japanese community too. Junko has spearheaded these efforts and keeps them informed of our progress.
From May 29 to June 1, a neurology conference took place in Tokyo (AOCN 2024). Junko and six other volunteers whose children and spouses have DRPLA, prepared a conference booth and took turns presenting. The booth was a meeting point used to display pamphlets from CureDRPLA and engage with 60+ health professionals, many of whom follow people with DRPLA.
One of the volunteers said:
“I am grateful to have been able to attend this conference and to have been given this really valuable opportunity. I was able to meet and talk with fellow mothers, and I was reminded that we all feel the same way. […] I hope that clinical trials will start in Japan as soon as possible.”