A Message to Patients and Families
For more than 30 years, I have been involved in the care and research of DRPLA.
Over the years, I have met many patients and their families, and I have learned so much from their experiences and from the way they have faced this disease.
I remember visiting a family at home and quietly sitting beside a child with DRPLA and her father.
There was a calmness in that moment, yet I could feel the deep love and determination within the family. I was deeply moved.
I also remember a young girl who was still in junior high school when she experienced her first seizure and was diagnosed with DRPLA.
I was deeply touched by the way her mother, while coming to terms with the reality of the diagnosis, continued to support her daughter with all her strength.
Since those days, I have always carried one thought with me:
DRPLA is not only a disease that affects the patient. It affects the entire family.
With the support of their families, patients are able to find the strength to face each day.
And the voices and wishes of these families have become a powerful driving force for researchers and healthcare professionals like us.
DRPLA is a rare disease.
Because of this, many of the doctors who care for you may have had limited experience treating patients with DRPLA.
But please do not feel alone or lose hope.
We are committed to working together with healthcare professionals across Japan to share and make the latest knowledge and treatment information as widely available as possible, so that patients and families can benefit from the most up-to-date medical care.
We promise to continue providing information and expanding our network of support so that each of you can receive the best medical care possible at the present time.
After many years when there were no effective treatments, we are finally beginning to see a light of hope.
Clinical trials are moving forward, and researchers around the world are working seriously to better understand and treat this disease.
This progress has been made possible because patients and their families have continued to speak out and move forward, never giving up.
Please continue to hold on to hope.
The power of that hope can lead to better treatments for the next generation.
I will continue to walk alongside all of you.
Osamu Onodera, MD, PhD
Niigata University Brain Research Institute
Principal Investigator, Ataxia Research Group
(including DRPLA)
Osamu Onodera, MD, PhD
Director, Niigata University Brain Research Institute
Deputy Director, Niigata University Medical & Dental Hospital
Board Member, Japanese Society of Neurology
Board Member, Japanese Society of Dementia
Board Member, Japanese Society for Neurochemistry
Professor of Neurology
TEL 025-227-0666 E-mail [email protected]
Personal Web https://scholar.google.co.jp/citations?hl=ja&user=GlabWvwAAAAJ&view_op=list_works
Institute Youtube https://www.youtube.com/channel/UCpWpVzOgTP7zw8kNg63m52Q
HP http://www.neurology-bri.jp/
