Junko Shiozawa is our Advisory Board Member and her daughter has DRPLA. In May, Junko went to Japan to recruit more participants for the CureDRPLA Global Patient Registry. Although DRPLA is more common in Japan, we only have 7 Japanese participants in our patient registry.
While in Japan, Junko attended the 63rd Annual Meeting of the Japanese Society of Neurology and gave a lecture about DRPLA at the College of Nursing. She managed to speak with many neurologists that follow DRPLA patients. More than 10 years ago, when Junko’s daughter was diagnosed, she was told that there was very little hope that a treatment would be developed for this condition. However, from these recent 1to1 interactions, Junko felt that doctors have more hopes of finding a treatment in the near future.
Junko hosted a press conference at the Ministry of Health, Labour and Welfare, that was attended by TV media and newspapers. Junko presented CureDRPLA’s work and explained why it is so important for Japanese patients to join our patient registry.
From her trip, she learned that in Japan there is a lot of stigma around DRPLA and families do not like to talk about it because there might be other family members at risk. Moreover, in most families there are multiple family members affected at the same time and caregivers have very little time to complete the registry. The lack of treatment and hope is another challenge that we need to overcome – many families have been told by doctors there is nothing they can do to help their loved ones.
We are very grateful for Junko’s help and we now have a better understanding of what we should tackle to increase recruitment in Japan, and worldwide.
Junko is very active on YouTube where she documents her journey as a caregiver. She uploaded a video about her trip to Japan, you can watch it here.