FOR IAN FOUNDATION

2021 Promising Research

By: Franko Rahimi

Some of our supporters may recall that in 2018, Dr. Arthur S. Tischler’s research on SDH deficient PDX’s (Patient Derived Xenograft) at Tuft’s medical center resulted in a beter understanding of SDH deficient GIST and what came to be known and published as the “Ian GIST model”.

These PDX’s were developed directly from Ian Rahimi’s tumor Tissue.

Dr. Arthur Tischler’r findindings were presented at the 5th International Symposium of Pheochromocytoma in Sydney, Australia in May of 2018. You can read an abstract of Dr. Tischler’s talk where he also talked about Ian, “the patient”, showed Ian’s pictures to the researchers, and discussed his battle.

Beyond Paragangliomas: Getting the GIST of Syndromically Associated Tumors

Subsequently, Dr. Tischler was joined by colleugues at Tuft and a MIT who published a paper in a highly respected journal. This was the first major scientific paper which mentioned the “Ian GIST model” and “For Ian Foundation”. Click below for a copy of the paper published by Dr. Tischler and his colleagues.

A unique model for SDH- deficient GIST: an endocrine related cancer

Scientific progress is generally the result of building on previous research. In 2021 a researcher, Dr. Florian Muller, formerly of MD Andresen, had seen Dr. Tischler’s work and paper on the “Ian GIST Model”. The scientific details of Dr. Muller’s work and a subsequent paper published in the journal “Nature” is beyond the scope of this article. What is important to “FOR IAN FOUNDATION” is the fact that the SDH deficient PDX derived from Ian’s tumor had now been provided from Dr. Tischer to Dr. Muller. “For Ian Foundation” sponsored and supported Dr. Tischler’s research which allowed him to publish his paper.

Ian’s PDX was used by Dr. Muller and a paper titled “An enclose inhibitor for the targeted treatment of ENO1-deleted cancers” was published in the very pertideos Journal “Nature”. This paper was the result of many collaborators and its scientific importance is quite beyond the scope of this article. However, we do know that the SDH deficient model contributed to this research. Shortly after the publication of the paper in “Nature”, Dr. Muller took a position with Sporos Bioventures, he infact contacted Dr. Tischler and “For Ian Foundation” for additional Ian Gist Model’s PDX material. While he offered to actually pay ($10,000) for the PDX material and explained that these type of purchases are often done in the academic world, I father explained that son’s cancer tissue is not for sale. The cancer tissue in the form of PDX was made available to Dr. Muller as it would be to any ligitimate researcher or research organization. Our hope is that Dr. Muller and Sporos Bioventures will go on to make a very effective cancer drug and will remember our little foundation at that time.

I’d like to end by what Dr. Muller told me on the phone. He said he may make a drug that will be very effective against SDH difficient cancers (Ian’s cancer); however, it would be very unlikely that a pharmacutical company would manufacture a drug like that for a cancer with such a small number of patients. He also said that while his drug may be say 90% effective against SDH deficient GIST it may also be say 50% effective against big cancers (Lung, Colon, etc.). The pharmacutical companies would certainly look to manucature such a drug. I so wish that Dr. Muller is successful and know that Ian would be so proud that his cancer cells may have played a small part in improving the lives of so many afflicted with cancer.

Note:
The business of PDX’s and who actually “owns” various PDX’s is apparently the subject of complicated intellectual property matters and in some cases litigation. “FOR IAN FOUNDATION” does not have the resources to get involved in these matters. We do know that Champion Oncology, one of the developers of IAN’s PDX somehow took ownership of this PDX and in fact sold it to various reserachers. This issue was discussed with Mr. Ronnie Morris, CEO of Champion Oncology, and needs to be revisited for a friendly resolution.