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I am a family member of a patient with a rare neurological disease.
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This is a picture of me taken during a family karaoke session. late November 2020 was a normal day in my life. It was super fun to have my husband and son accompany me to practice before participating in an online karaoke competition.
My name is Hitomi Aoki. I've been running English classes in Miyoshi City, Hiroshima Prefecture for six years, a fractal psychology counselor for six years, and I'm involved in other activities to improve English education, such as English Restoration by Yayoi Oguma, a simultaneous interpreter and English education reformer.
My husband, who used to go golfing in December, is now unable to walk, type on the computer, write documents, or speak freely. His condition is fluctuating and he continues to be hospitalized. The cause of the illness is unknown and there is no established treatment.
Until then, He and I and our son were living a peaceful and happy life together.
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The disease was so minor that even the big hospitals couldn't figure it out, and He was passed around from one hospital to another. And Miyoshi medical center accepted him and now ndergoing treatment at Hiroshima University Hospital. They really saved my life. However, because of the corona problem, it was difficult for me to visit hime, and with no future in sight, I had to do my best to support myself. I have been searching for something that I can do to move forward, and here I am. Since I can't do anything for my husband, I wanted to do something to help pave the way for the future of my husband and other people with neurological intractable diseases, even if it is very indirect. I would like to contribute to the advancement of medical research on intractable diseases so that many people can live a life of peace of mind, even if it is a small contribution. I would appreciate your cooperation!
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Yayoi Oguma, a simultaneous translator and educational reforme
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Hitomi, I believe that you will succeed. I sincerely hope that research in neurological intractable disease medicine will advance and save your husband and many others.
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Kumiko Imani, The President of ABC International Preschool
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What would you do if all of a sudden your beloved family member was diagnosed with a rare and incurable disease for which there is no established cure?
Hitomi Aoki, after much helplessness and tears, chose the path of hope. She decided to support the researchers and research facilities that are working on curing intractable diseases.
 I respect and support Hitomi for turning her frustration at not being able to do anything into energy that she can put into what she can do now!
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ãSachiko Ishibashi, English teacher and English coach
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Ms. Aoki runs an English class, has a child preparing for entrance exams, and wants to contribute to the English education of Japanese children. Ms. Aoki and I have these things in common. I couldn't help but feel heartbroken at the suddenness of the event and wondered what I would do. I admired his ambition to support the research facility. I will support you from the bottom of my heart.
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Mika Takahashi, Legal secretary
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I work as a clerk at the law firm where Ms. Aoki's husband is the branch manager.
Ms. Aoki's husband  started mentioining of slight physical changes at the beginning of December last year, and the symptoms got stronger and stronger until by the end of December, he could no longer walk and was unable to go to work.
Seeing the progression of his symptoms and hearing about the hardships and heartaches of his family, I was really worried to see Mr. Aoki and his family suffering from such an intractable disease, and I was also frustrated that there was nothing I could do.
When I heard about this crowdfunding project, although it is not directly related to alleviating Mr. Aoki's symptoms, I would like to help him, his family, and everyone who is suffering from neurological intractable disease.
I hope that the research of NANORUS Inc. will continue to progress, and the day will come when those who are currently suffering will be able to smile.
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Mie Sota, Legal secretary
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If research on intractable neurological diseases progresses, and if the device is put to practical use and a treatment method is established, many people will be saved.
I agree with this project to support people who are passionate about saving patients and are engaged in research. I also hope that intractable diseases will become "curable diseases" in the future.
I hope that the thoughts of Ms. Aoki, who launched this crowdfunding project while supporting her husband who is battling an incurable disease, will reach the hearts of many people.
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This project is a joint project with the "Neurological Intractable Disease Control Fund".
All of the funds raised, except for the costs related to the production of the returned goods, will be used to support the "Neurological Intractable Disease Control Fund", which supports the development and production of a practical device to pursue the causes of neurological intractable diseases.
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Commission fee 9%.
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Support money for the Neurological Intractable Disease Control Fund
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Neurological Intractable Disease Control Fund
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Tsuneo Urisu
Professor Emeritus, Institute for Molecular Science, National Institutes of Natural Sciences
Dr. Tsuneo Urisu received his Ph. D. in Science from the University of Tokyo in 1973. He was a researcher at the Musashino Research Institute of Telegraph and Telephone Public Corporation, a researcher and group leader at the LSI Research Institute of Nippon Telegraph and Telephone Corporation in 1983, a professor at the Institute for Molecular Science of the National Institutes of Natural Sciences in 1992, a specially appointed professor at the Research Center for Innovative Nanobiodevices, Nagoya University in 2011, a visiting professor at the Green Mobility Collaborative Research Center, Nagoya University in 2015, and a visiting professor at the Institute for the Creation of Future Society, Nagoya University in 2016. He is a visiting professor at the Center for Collaborative Research on Green Mobility, Nagoya University, and a visiting professor at the Institute for the Creation of Future Society, Nagoya University.
 From å®çé æé å çãFrom Dr. Tsuneo Uribe
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ç§ãã¡ã®éçºããŠãã解æè£ çœ®ã¯ãALS, ME/CFS以å€ã«ããã·ã£ã«ã³ãŒããªãŒããŒã¹ç ãããŒãã³ãœã³ç ãå€çºæ§ç¡¬åçãèé«å°è³å€æ§çãçºéé害ãªã©ãã»ãšãã©ãã¹ãŠã®ç²Ÿç¥ã»ç¥çµé£ç ã®è§£æã«æçšã§ãã
Many neurological intractable diseases, such as ALS, ME/CFS, etc., are known to exist, but their causes are still unknown and no definitive treatment is available, despite the efforts of excellent researchers around the world for nearly 100 years or more. We thought that a major reason for this difficulty was the lack of analytical equipment that could accurately analyze the pathogenesis of these extremely complex diseases.
We started research on the development of an ultra-precise analyzer of neural functions about 10 years ago, and the results have exceeded our expectations, and we were able to produce a prototype of the analyzer.
Thanks to the cooperation of many people, we were able to raise funds for the production of the prototype through the support of the Japan Science and Technology Agency and crowdfunding.
However, even after the completion of the prototype of the analysis device, we still need funds for further research and development to develop a practical device, so we have decided to start the "Let's open up a future without neurological intractable diseases" project. With the funds raised by this donation, we will build a practical cultured planar patch clamp device and bring together the wisdom of the world to open up a future without intractable neurological diseases.
In addition to ALS, ME/CFS, our device will be useful for the analysis of almost all psychiatric and neurological diseases, including Charcot-Marie-Tooth disease, Parkinson's disease, multiple sclerosis, spinocerebellar degeneration, and developmental disorders.
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In order to cure neurological intractable diseases, we need technology to precisely analyze the pathology.
There are more than 10,000 neurological intractable diseases such as ALS. There are nearly 1,000 neurological intractable diseases for which the responsible genes are known, and these are just a few of them. In addition, the difference between abnormal and normal is very small. Pipette patch clamps can be used to detect these small differences, but the neuronal network is very heterogeneous, consisting of many different cell types.ãIt is necessary to measure many points of the network at almost the same time in order to accurately capture the pathology. However, it is extremely difficult to measure multiple points with a pipette patch clamp.
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Pipette patch clamp
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The most powerful method for measuring cell physiology and function (Nobel Prize in Physiology or Medicine, 1991) It can precisely capture overexcitability, as shown in the figure, as well as differences between cells and slight changes in the course of life. However, the pipette patch clamp can only measure one point.
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Cultured planar patch clamp
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Using Si semiconductor planar technology, we formed a structure with many bottom to top facing pipettes. When culture functions are added, the electrical resistance (sealing resistance) of the gap between the cells and the substrate cannot be reduced, resulting in high noise. By using special stabilized electrodes, we were able to suppress the noise and successfully measure ion channel currents of the same quality as pipette patch clamps from nerve cells. (World's first).
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We have succeeded in measuring ion channel currents (miniature currents) from primary cultured neuronal networks in the rat hippocampus.
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Development of prototype measuring instruments for practical use
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Neurons have many ion channels, which regulate the function of the network. How are genetic mutations or damaged components distributed throughout the network, and how do they change as the disease progresses? Are there any abnormalities in other parts of the network? If we can find out the details, we can pursue the cause of the disease. Currently, we are working on a prototype device with four channels as a first step toward the practical application of the device we have developed.
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The new technique will allow us to measure the neurodegenerative diseases other than ALS, such as Alzheimer's disease, Parkinson's disease, and spinocerebellar degeneration.
It may be possible to identify the cause of the onset of these diseases. This is the first step in turning intractable diseases into "curable diseases.
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implementation Schedule
September 2021: Crowdfunding end
October: Start shipping returns
Transfer of support money to the "Neurological Intractable Disease Control Fund
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This project will be implemented on an all-in basis.
This project will be carried out on an all-in basis. Even if the target amount is not met, we will carry out the plan and deliver the returns.
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This is a key chain made by Dr. Tsuneo Urisu of a picture drawn by a patient, Yoshiaki Nagao, with his only slightly moving leg. It's beautifulâš.
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Tote bag in collaboration with the image character of the Fund for the Suppression of Neurological Disorders, Nanorsu-kun, an otter, and Okazaemon
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I (Hitomi Aoki), who has been teaching English for 6 years, will give English lessons to children online. I can also give advice to adults on how to improve their English.
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Because of the small number of patients with rare neurological intractable diseases, there are many neurologists who do not know about the disease, and many of them experience difficulties until the treatment takes off, such as being told that there is no such disease and being sent home. It is not anyone's fault, but like my husband, who has worked hard to create a better, stronger and kinder society, I would like to leave some kind of positive impact on society, even if it is small. I want to take even one step forward to advance medical research for intractable diseases.
This project is also a project for me to live a positive life. I may be self-centered and self-satisfied, but I decided to do this because I thought it would bring hope to the families of patients with intractable diseases who are suffering from the same pain of not doing anything. Also, when my husband was diagnosed with an incurable disease, I realized how many people have supported us. Why don't we start a movement together to express our gratitude?
I believe that we can change the world and make a difference by doing what we patients and families want from society, starting with what we ourselves can do. I really appreciate your support.
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