Help Support Research for a Rare Form of Children's Epilepsy by Funding the Distribution of Books and Leaflets

KIYO FUND (A support society for SME research )

〒665-0854 6-1, Mefuyamatechō, Takarazuka-shi

One set = ¥360

We create and send picture books and leaflets to be placed in hospital waiting rooms to increase awareness of Dravet syndrome, a rare and debilitating form of child epilepsy. We also have flyers that request entry into the research database that are distributed to patient families of children with Drabe syndrome. The information in the database can be accessed by doctors, researchers, school teachers and patient families all over Japan, which is useful for further research. Through research a new drug can be developed. We were planning to send booklet sets with last year's grant, but were only able to send about half due to lack of funds. Through Gochiso donations we hope that the other half of the booklets can be sent to the hospital.

Current Amount

¥13095 (36 sets )

Target Amount

¥36000 (100 sets )

Supporters

6

36.4%


しのぶ岩朝 donated ¥173 through curry&cafe Warung! 12 days ago
pippi Hirayama Hiro donated ¥702 through Sekahe! 25 days ago
Philip Nguyen donated ¥477 through Le Marrakech! 28 days ago

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Project Description

Dravet Syndrome occurs in 1 in 40,000 children. It was designated as a child-specific disease in 2005, and incurable in 2014. A major characteristic of Dravet Syndrome(SME - severe myoclonic epilepsy) is that there are many types of seizures, some debilitating lasting more than 2~3 hours. It may cause encephalopathy and even death as some children stop breathing.
Many ordinary things in daily life can trigger seizures such as bathing, sunlight filtering through the trees, polka dot and striped patterns etc. It is hard to eliminate these factors in daily life.
Your donations help fund our research grant and increase awareness to add information to our database. We hope that a new drug will be developed through our research grant. Thank you for your support.

Director

Yuko Hayashi

Representative Yuko Hayashi was born in Hyogo Prefecture and lives in Takarazuka.
Her second son developed Dravet syndrome at 6 months of age. Like other children with Dravet syndrome he suffers from seizures and epilepsy which made him cautious to engage in new activities. But with his family's support and contact with other people his attitude and demeanor changed. Based on that experience, she set up "Kiyokun Foundation Funding Party" and held a pop concert as an activity to deepen our understanding of epilepsy. To raise awareness they held plays and directed an original enlightenment program including a one-man show, a musical, a shadow play, and a story reading . Ms. Hayashi received the Cabinet Secretary's Award at a composition contest to expand the circle of mind. She was the Hart's "One Man Award" Grand Prix Winner for the book she wrote "The Heart Helper Dog Tenchan". She also published "Kimen of Special Talents".
Ms. Hayashi established the "Kiyokun Fund Support Program" and produced "Database of quality of life (QOL) improvement for Dravet syndrome" to help families and doctors with care for children with Drabe syndrome.

Categories

Human Services‎

Description

Children‎, Research‎, Health, Welfare, Disabilities

Website & Social

Once a year, we hold "Kiyokun Fund grant" for research of the Dravet syndrome once a year for 500,000 yen.
We hold a commemorative lecture with researchers and a have a family exchange meeting for patients with Dravet syndrome.

We create and manage databases to improve QOL(quality of life) for those with Dravet Syndrome. We ask patient families to fill out information and we make this information available to other families, doctors, researchers, teachers, and supporters after registration.
The databases are divided based on each gene mutation and into sections: Medical(seizure, taking medicine), Health(body, rehabilitation), Life(service, living place after parents death).
We hope children with Dravet Syndrome can enjoy their childhood and that this information can reach other families and support patients even after their parents are gone.

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