A leiomyoma sarcoma patient Kaja Onishi found an English research paper on the treatment of sarcoma. The paper was written by Dr. Katsuhito Takahashi and Hisako Yamamura’s research group at Research Institute, Osaka Medical Center for Cancer and Cardiovascular Diseases. The medical network was formed naturally by her doctor in charge and other doctors who treated her metastasis organs at Okayama University Hospital and Kanto Chuo Hospital.
In those days, Dr. Takahashi’s sarcoma research group did not have sufficient funds and the research did not seem to be advancing very successfully. We wanted to be of much proactive help by creating a group to assist the doctors’ research activities. Then we established a group called Cure Sarcoma to assist promoting targeted gene treatment.
At the beginning, two sarcoma patients and one of their friends were the members and started to publish information on sarcoma and sarcoma research status through its homepage. Their first objective was how to raise funds for the sarcoma research group.
At that time a yellow wristband fund-raising program started to help a cancer patient Lance Armstrong, a famous American cyclist who had won the Tour de France. We also created our own original wristband called “Cureband” and started to sell them.
Just in about one year, we could raise 9 million yen and donated all the funds to SMTRC (Sarcoma and Mesothelioma Translational Research Center).
In addition, in order to obtain a grant from Ministry of Health, Labour and Welfare to SMTRC, we gathered more than 100,000 signatures on our petition for sarcoma treatment and submitted them to the then Minister. SMTRC could get a grant for advanced medical treatment research.
SMTRC could also obtain assistance from private corporations because the effect for sarcoma-type mesothelioma was expected. This helped SMTRC to secure enough funds to continue their medical treatment research. After accomplishing our first fund-raising objective, Cure Sarcoma suspended proactive activities and only updated blogs on the homepage. During this period, two sarcoma patients who started up Cure Sarcoma died in 2006 and in 2009.
Dr. Takahashi’s group held annual sarcoma seminars for patients and their families as follows:
2007 Gifu, 2008 Kyoto, 2009 Tokyo, 2010 Osaka and Tokyo
2011 Kyoto, 2012 Osaka, 2013 Osaka, 2014 TBD
In November, Dr. Takahashi set up General Incorporated Association Cure Sarcoma Center in order to conduct sarcoma medical treatment jointly. Cure Sarcoma (sarcoma patients group) started to participate in this Cure Sarcoma Center as well as SMTRC (Sarcoma and Mesothelioma Translational Research Center) and Cure Sarcoma Board (sarcoma treatment doctors’ group).
We participated in Relay for Life in Tsukuba as Sarcomas for the first time.
In April, a leiomyoma sarcoma patient Hiroyoshi Kawakami started up a communication tool for sarcoma patients and their families called Sarcoma.net (S-net).
Shinyamanote Hospital, in Higashimurayama Tokyo, established a preparation committee for setting up sarcoma chest and abdominal surgery treatment center. A representative from the sarcoma patient group became one of the committee members and submitted a request for treatment, facility, and medical equipment to the hospital. We also reported our activity summary at the Japanese Orthopaedic Association’s medical conference.
A new Vascular Endothelial Growth Factor (VEGF) inhibitor Pazopanib (Votrient) by Glaxo SmithKline was made available for medical treatment under health insurance on November 23. Its application was targeted for malignant soft tissue tumors, which meant most sarcomas were applicable.
In April, sarcoma patients group Cure Sarcoma became an independent organization from General Incorporated Association Cure Sarcoma Center. We wanted to develop our group to widely support sarcoma patients, not only limited to support sarcoma treatment and research activities of Dr. Takahashi’s group.
In March, our patient group Cure Sarcoma helped Cure Sarcoma Center on their symposium in Tokyo. Our members were at the opening reception tables to guide conference participants.
On May 28, Cure Sarcoma was officially granted as NPO by Tokyo Metropolitan Government.