Presented at the SIOP conference and ICCCPO meeting in Istanbul Sept. 23rd. 1997

Ladies and Gentlemen, it is a great honor for me to be given this opportunity to address you on the occasion of this meeting. I would like to introduce our developing activities. The Children's Cancer Association of Japan, (in short C.C.A.J. and also called: "Hope Foundation") was established 29 years ago. The name "Hope Foundation is used when we contact our members confidentially, because some members do not like to use the term "Cancer". At the time of the founding of the C.C.A.J., a diagnosis of cancer was equal to a death sentence. There was only a little number of specialized doctors and treatment options. This caused serious problems to many families.

In order to support these families, C.C.A.J. was established by bereaved parents at the end of October 1968. At that time, I was one of the bereaved parents. I had lost my second son to Lymphoma. C.C.A.J. has also been supported by pediatric oncologists, the Japan Medical Association, the Ministry of Health and Welfare and other organizations. C.C.A.J. was financially supported by the Fukoku Life Insurance Company with a large amount.

Activities of C.C.A.J. in 1968 and 1969:
C.C.A.J. appealed to the society to recognize the necessity of the specialized medical doctors and treatment options. Our slogan was "Give me life". 

At the same time C.C.A.J. 
· established a committee of medical treatment studies for cancer research, 
· started the registration of all pediatric cancer patients,
· established financial support to families in need. (For instance, their income decreases as they need special medical treatment which is not covered by their insurance),
· conducted a support group for bereaved parents,
· provided counseling services by medical doctors and social workers.

In 1970, C.C.A.J. made a petition for a public assistant plan to the Japanese Government which covers cancer related medical expenses. It was approved in 1971 and has been available up to now. 

In 1979, C.C.A.J. held the 10th annual international symposium, and started a campaign which aimed to reduce the death rate by half. In 1989, C.C.A.J. held the 20th annual international symposium; by that time, almost half of all cancer children survived, and C.C.A.J. indicated the achievement of the campaign goal.

Now, even though more than two thirds of all cancer children survive, they still need to receive relapse prevention follow up which is physically and mentally tough. On the other hand, late effect issues related to the treatment are a big problem.

Long term activities of C.C.A.J.:
· To provide information, referral and counseling services to help all parents in getting the most appropriate anti-cancer therapy and psychological support for their sick child.
· To provide the most appropriate psychosocial and physical support for families
· To arrange accommodation facilities for families.
· To create an effective terminal care plan.
· To provide psychological support to bereaved parents in order to help them to cope with the loss of their child.
· To provide continuous financial means for cancer research in order to keep a close relationship with the physicians.
· To collaborate with other associations.
· To help coping with the late effects, such as mental, emotional and physical disabilities of cancer survivors.

Activities of C.C.A.J. for today:
· Support of cancer research and treatment projects: C.C.A.J. supports 10 projects such as: 
Study and development of umbilical cord blood stem cell transplantation. In our country, there are two specialized blood banks, but those are locally organized. We strongly advise to centralize those two facilities.
Research and development projects on late effects.
· This project is managed under the committee of the registration of pediatric cancer patients. About 33,500 cases have been reported so far. All nominations are strictly confidential.
· Conduct General Assembly Meetings:
The Assembly Meeting is hold once a year at the middle of June (at the most comfortable season)
· Presentation of pediatric Cancer Research Award:
This award is presented to young medical doctors, members of the society of the Japanese pediatric oncology.
· Participation in work shops.
· Preliminary operation of accommodation facilities where families may have a home away from home: This project is being developed and shall be in service soon, however, C.C.A.J. is already managing two residential facilities in the Tokyo area.
· Financial Assistance for families in need:
· Publication of a newsletter: Newsletters are printed 5 times a year. About 5000 copies are mailed to our members, public offices, hospitals and cancer wards.
· Support of the activities of our local chapters:
Now, C.C.A.J. has 12 local chapters. Generally, families in rural areas have traditional family structure, and most of them do not have financial trouble. However, they have limited access to any support system. The aim of the local chapter is to provide psychosocial support to such families. 

· On the other hand maintenance of excellent relationship with the medical staff is an important activity. These activities are conducted by local members and the health care staffs such as doctors, nurses, social workers, and volunteers.

Fund raising methods:
1. Bank Interest
2. Donations
3. Membership Fee:
Regular membership fee 
Supporting membership fee
4. Special Aid, national/public aids.

The structure of C.C.A.J.:
C.C.A.J. administration has two big hands. One is ourselves and the other is in charge of the society of J.P.O. 
C.C.A.J. has a close relationship to the medical doctors.