Here is the link to the video, it was hard to do but important. The best part is seeing our son so matter of fact, happy & active.
The researcher mentioned in the video is Dr. Nielsen who is located in Vancouver BC in Canada and he does some impressive research on SS (http://members.shaw.ca/tonielsen/), we need more researchers to work on SS and more funding of SS research.
Thanks for posting the video. It is a nice one. Dr. Nielsen is well-known in sarcoma research. I believe he got his original grant from the Terry Fox Foundation and the Canadian government. He is one of the recipient for the recent $250,000 grant given by the Liddy Shriver Foundation for liposarcoma research:
http://sarcomahelp.org/research_center/grant032.html
I am little frustrated by the time it takes to translate basic research into clinical trials. Dr Nielsen's team found many years ago that HDAC inhibitors worked in vitro for synovial sarcoma:
http://www.ncbi.nlm.nih.gov/pubmed/18519690
A clinical trial started last year and had to be interrupted because the company ceased drug production:
http://forum.synovialsarcomasurvivors.org/profiles/blogs/sbio-initiates-canadian-phase
Most basic synovial sarcoma research comes from Japan. There are few universities in the US that do basic research. One example is Capecchi lab at University of Utah. They designed a mouse model for the disease and they are now using it to investigate the disease. They got grants from the Paul Nabil Bustany Fundation and the Sarcoma Foundation of America. I believe it is easier for a laboratory to start research on a rare disease if they get grant no only from the government but also from foundations dedicated to the disease. It's important to support those foundations.
Yes - Dr. Nielsen is quite impressive. Terry Fox actually inspired him as a young boy, & we are all lucky for his interest in SS, there is a need for more basic research on this and more funding as you point out - and yes a need for increased speed to move promising things to the clinical stage. Foundation support is key, and one other thing we have found is that we are able to donate to the Canadian Cancer Society and the BC Cancer Agency and ask that it go directly to Dr. Nielsen' research.