Junko Shiozawa, our Advisory Board Member, has been on a remarkable journey of advocacy and awareness since her daughter was diagnosed with DRPLA 15 years ago. Her daughter currently faces significant health challenges, being bedridden with a gastric tube and a tracheotomy, and her husband passed away from this condition six years ago. With DRPLA being more prevalent in Japan, Junko has drawn upon her professional experience as a journalist to bridge the gap between Japan and CureDRPLA.
In late September, Junko went to Japan to deliver a lecture to clinicians and other medical professionals at the National Center of Neurology and Psychiatry (NCNP) in Tokyo, Japan. There are six advanced medical research facilities in Japan, NCNP is one of them and many Japanese patients with DRPLA go there because of the expertise in clinical care.
In her lecture, Junko shared the mission of CureDRPLA and the need to collaborate on a global scale. Shedding light on the thoughts and emotions shared by families like hers who witness their loved ones deteriorate day by day. It was very meaningful for Junko and CureDRPLA to have this opportunity to spread awareness of DRPLA and our efforts.
Whilst at NCNP, Junko had the privilege of interviewing Professor Hidehiro Misuzawa. You can watch the full interview on her YouTube channel.
“Every patient family has its own story, as medical professionals get close to the patients’ families.”
Junko Shiozawa
“We also want our patients to get better somehow, so it is very painful to hear that we cannot do so. […] There is a lot of research being done, so I think there is potential.”
Professor Hidehiro Misuzawa
Junko’s mission is to establish a connection between the Japanese community and CureDRPLA. She has successfully formed a DRPLA family group in Japan, with regular Zoom meetings for information sharing and exchanging personal experiences. The number of participants in this family group is gradually growing and she actively encourages them to join the patient registry (more information available here). Junko’s commitment to increase awareness about DRPLA and our efforts is a source of immense gratitude.