Huntington's disease (HD) is a devastating, progressive neurological disease that is inherited from your parents. Symptoms typically manifest between 35-44 years of age, resulting in uncontrolled movements, emotional disturbance and cognitive decline that progressively worsen. The person will survive, on average, 20 years with these symptoms. Although physicians can prescribe medicines to help control some of the symptoms of the disease, there is no way to cure or halt progression of HD.
There has been some progress made in understanding HD. In 1983, researchers discovered the first genetic marker for HD. This was a crucial piece of the HD puzzle, and in 1993 led to the eventual discovery of the mutation that causes HD, opening the door for genetic testing and new methods of research dedicated to finding a cure. However, so much more needs to be done. Projects to raise awareness of HD, like The Lion's Mouth Opens, will educate the public about the need for additional research.
Emerging research is helping us understand HD in new ways, and demonstrates the importance of basic research to discover new knowledge about the brain. It is only through this initial discovery phase that we can move on to application of findings, before progressing to testing and finally to treatment.
Brain Research Foundation plays a key role in progressing the understanding of neurological diseases such as HD. We fund research from the ground up. It can be called "basic research," "early-stage research," "bench-side research" or even "translational research." No matter the title, the goal is to advance innovative, groundbreaking research. Brain Research Foundation provides scientists with the funding to build a foundation of knowledge crucial to future discoveries, treatments and cures.
Early-stage research not only has the potential to yield new discoveries in HD, but it also provides scientists with a more in-depth understanding of the brain and how it works. This deeper understanding can provide insights into other neurological diseases and disorders. For example, Brain Research Foundation recently funded a project that uses state-of-the-art technology to view nerve activity in a specific area of the brain that has been associated with not only HD, but other neurological and psychiatric disorders like Parkinson's disease and obsessive-compulsive disorder.
The project was extremely successful. Was a cure discovered? No. Did a novel treatment come from it? Not yet. But the knowledge gained was shared and the results were published in a top-tiered scientific journal that other scientists will read and build upon. In addition, the researcher was able to use the data to receive a large, $1.5 million government grant from the National Institutes of Health (NIH) to further investigate.
It can take decades of research into a brain disorder before the concept of a new treatment is conceived by scientists. More research funding would help hasten the pace of this discovery. Today, the largest unmet need in science is our ability to fund even more promising research. Illustrating this funding challenge, the NIH reports that the average of first-time investigators obtaining important research funding from the government has risen to 42 years of age, which is approximately 15 years after attaining a Ph.D. or M.D.
As a young neuroscientist I struggled to find funding to support my research projects, and recently I lost my own mother to a devastating neurological disease that robbed her of everything before she died. As a scientist and as a daughter, I personally understand the tremendous need to fund early-stage research to find answers. That is why organizations like Brain Research Foundation have supported ground-breaking neuroscience for more than 60 years. Every new discovery moves us one step closer to finding treatments and cures to brain-related disorders like HD. I look forward to that miraculous day when scientists announce a cure.
This op-ed is a part of a Huntington's Disease Awareness Month collection and in collaboration with The Lion's Mouth Opens, premiering on HBO this June 1 at 9/8c.