My Biomedical Research Advocacy Continues

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I have often written about the need for adequate research funding and the challenge researchers have funding their labs. The cancer researchers that I met over the past 4 years consistently told me they spend up to 75% of their time fundraising - between writing grants to the National Institues of Health (NIH), private foundations and public charities, and meeting with individual donors. Scientists like John Whetstine at Massachusetts General Hospital happily meet with people to talk about their research and John works a lot of hours writing grants. The more time he spends in his lab the less time he has to test new ideas. Another scientist, Dr. Wayne Marasco at Dana-Farber Cancer Institute laments the fact that he could be in the lab making discoveries were it not for the fact that he has to spend so much time writing grants. And in oncology, the chance of receiving an NIH grant is only 10%. Having now spent almost a year at FRAXA Research Foundation, I see that it is no different in research labs that study fragile X and other neurological disorders.

FRAXA has poured over $26 million into fragile X research, funding research projects across many different laboratories and in 2017 funded some exciting projects such as drug repurposing, clinical trials and gene reactivation. These labs could do so much more if they had the resources. However, as with cancer research, fragile X scientists have the same challenge in securing funding. The time it takes to write grants to the NIH or Department of Defense (DoD) takes up an inordinate amount of time. This is so frustrating to me because many labs have theories that could be studied if time could be freed up from work outside of the lab. Of course, it also points out the important role that organizations like FRAXA play. FRAXA funding helps support post docs in the labs to test the theories of primary investigators as well as their own hypotheses. A $50,000 grant from FRAXA can support one post doc for a year, which is a huge benefit to a laboratory. FRAXA has supported many post docs over the years and many have then made discoveries that led them to moving on to start their own labs. This opens a space to bring in new post docs into the field. For example, FRAXA has supported Dr. Mark Bear at Massachusetts Institute of Technology (MIT) for many years. Several post docs from his lab have since moved to open their own labs. A great example of this is Dr. Kimberly Huber, who started her own lab at UT Southwestern. Over time, this means that more brilliant scientists are brought in to the field of fragile X research. Without FRAXA’s support, this would not be possible. Another important role that FRAXA has played historically is de-risking research. By funding early basic and translational research, FRAXA has helped several labs use the data produced from FRAXA grants to apply for and receive NIH grants. For example, FRAXA funded Dr. Hongbing Wang’s lab and this lead to a large NIH grant.



The United States still leads the world in biomedical research spending but other countries are closing the gap. From 2007-2012 the U.S. share of global public and private biomedical R&D investments dropped from 51 to 45 percent, while a generation ago the U.S. funded as much as 80 percent of the global activity. Meanwhile, many Asian countries raised their investments in the same period with double-digit annual growth rates, topped by China's nearly 33 percent. This is concerning to me. I think we will see the negative impact of this 20 years from now. The breakthroughs we see today were paid for by research 20 years ago. The fact that the amount of research funded by the NIH declined by nearly 25% between 2003 and 2015 is a huge hit to research, and in particular to researchers starting out in their careers (post docs). Therefore, I believe we need the government to up the ante on public sector research funding, and private philanthropy must continue to play an important role. This is why I continue to be an evangelist and advocate for biomedical research funding.


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