ORIGINS OF "FOR IAN FOUNDATION"
For Ian Foundation's mission is to continue the work started in 2013 known as "For Ian GIST Project". This project was started to save Ian Daniel Rahimi and other young adults inflicted with SDHB Deficient GIST, a difficult disease that does not respond to conventional treatments. Other than surgically removing the tumors which often recur, to date, there is no standard protocol and drugs to deal with SDHB deficient GIST and SDHB deficient tumors in general. During Ian's battle with this deadly cancer, from October 2013 to November of 2015, through the support of numerous donors, Ian’s family was able to establish the “For Ian GIST Project” with Johns Hopkins as the Umbrella organization. This effort which raised nearly $3,000,000 in research funding combined the skills, expertise, and resources of clinician-scientists from Johns Hopkins, Harvard, Virginia Commonwealth University, the NIH, Columbia, Technion University, and Memorial Sloan Kettering in an effort to advance the state of the science for patients diagnosed with this rare cancer. Outside of academic medicine, organizations such as Champion Oncology, Store My Tumor, and MITRA Biotech also contributed resources to this vast team effort. While Ian sadly passed away from his disease in November of 2015 after a two-year battle, For Ian Foundation was established so that the efforts begun in his name shall continue. A befitting legacy for Ian and a testament to the dedication of this team of scientists to make a difference in the lives of patients and families diagnosed with this rare and difficult cancers.
PROGRESS MADE AS RESULT OF OF THE FOR IAN GIST PROJECT
There were a number of proposals and projects which were undertaken during the "For Ian GIST Project". A list of these projects, the proposals, and some of the results are detailed under the Project section of this site. Perhaps, the most significant work accomplished during the "For Ian GIST Project" can be summarized as follows.
- It's believed that prior to Ian GIST project, none of the institutions involved in research of SDH deficient GIST, had managed to produce a mouse xenograft of the disease. As a result of the efforts of this project, a mouse model was developed. Today the single mouse models has been expanded and are now being studied at more than one institution. Similar to not having a mouse model, none of the institutions was able to produce a cell line, sometimes referred to as an immortal cell line, of SDHB deficient GIST. As of the writing of this summary, this crucial need is still eluding the research institutions, while there are reports and a few researchers are confident that they will be able to produce and maintain a cell line
- At Johns Hopkins, Dr. Victor Velculescu and others developed detection of circulating tumor DNA for GIST and SDH deficient GIST by examining changes in plasma DNA through targeted as well as whole genome methods.