The following table shows the prevalence for FSHD and two better-recognized neuromuscular disorders, Duchenne’s muscular dystrophy (DMD) and amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease). Also shown is the research funding in 2013 for the three diseases from the two primarily funding sources, the National Institutes of Health (NIH) and the Muscular Dystrophy Association (MDA). Finally, it shows the 2013 funding for FSHD research by the FSH Society.
Table: Prevalence (affected individuals per 100,000 population) and 2013 funding for research.
|Disease||Prevalence||NIH Funding||MDA Funding||FSH Society Funding|
|FSHD||12||$5 million||$0.45 million||$0.66 million|
|ALS||5||$39 million||$4.5 million||—|
|DMD||5.2||$33 million||$6.85 million||—|
So, what does this tell us? On the one hand, it indicates that FSHD is the most prevalent of these three diseases, or at the very least, that they are all of similar, low prevalence. It indicates the level of research funding for FSHD by both the NIH and MDA is significantly lower than for DMD and ALS, roughly 8-10 fold lower for the NIH and from 10-15 fold lower for the MDA. Finally, it shows that FSH Society research support for FSHD in 2013 was nearly twice that by the MDA.
But funding alone doesn’t tell a complete story. The question is not only about how much money was provided for research, but also how much was requested in the first place. Investigators obtain funding by submitting grant applications in which they outline any previous findings from their lab, provide a plan and budget for the proposed new research, and request the money required to support the project. Is the the disparity in funding for FSHD versus DMD or ALS indicative of a reluctance on the part of these agencies to fund FSHD research, or does it reflect differences in the number of grant applications submitted in these different research areas? Are there large numbers of FSHD grants applications that are denied each year, or are there relatively few labs submitting grants? I don’t have information about the number of grant applications submitted for FSHD research, but I do know there are currently relatively few labs around the world who do research on FSHD. In my view, the funding situation for FSHD is one in which funding agencies see it as a low-priority research area, as evidence by the few number of labs involved in the research, and upcoming scientists view it with limited appeal due to the low level of funding. In addition, as a result of the limited number of labs doing FSHD research, the number of scientists trained in FSHD who will go on to establish their own independent research groups is also low.
The challenge for the FSHD community is to not only raise awareness among the general population in a way that generates more financial support for research, but also to raise awareness among researchers in labs with the appropriate biological and technological expertise to move the research forward.