The Squeaky Wheel Gets the Grease

Carlos Briceño avatar

by Carlos Briceño |

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Dear people working to find a cure for Huntington’s disease (HD),

I imagine you all have various reasons for seeking a cure. Near the top of your list is probably a love for science and a challenge.

Or, perhaps you view HD like George Huntington, whose medical observations of people who exhibited spasmodic muscle movements, labeled chorea, led to him to publish a paper on the disease that later bore his name.

“I have drawn your attention to this form of chorea gentlemen, not that I considered it of any great practical importance to you, but merely as a medical curiosity, and as such it may have some interest,” Huntington wrote in 1872.

So, yes, medical curiosity is as good a reason as any to want to go down the rabbit hole that finding a cure requires.

I am thankful for whatever reasons, personal or professional, have led you here. I realize your job is an extremely difficult one. Finding a cure for HD, with all its ups and downs, seems to be as elusive as finding a needle in the ocean.

I have no doubt there are days you want to give up, or days when the sense of urgency is not as present. After all, HD is not COVID-19. During the height of the pandemic, Operation Warp Speed mentality gripped many researchers, scientists, and pharmaceutical companies, motivating them to develop a vaccine as quickly as possible, because hundreds of thousands of people were getting sick and dying.

There’s nothing like a pandemic to get a bunch of people to laser-focus and expeditiously find a solution to a terrible problem.

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Operation Warp Speed Should Inspire a Similar Effort for Rare Diseases

Although HD does not affect the same number of people or receive the same amount of news coverage as COVID-19, every second that ticks by brings my wife and daughter — both of whom are gene-positive for HD — and thousands of others around the world closer to a horrible end of life.

I know you’re trying your best to find a cure. I realize you probably need more funding. I have no doubt there is a huge lack of communication and collaboration between entities that, at times, probably hampers the growth necessary to make significant breakthroughs and advancements.

I’m writing this to say I wish I had the money and the influence to make your jobs easier, faster, and more efficient. However, I refuse to feel helpless. I’m a big believer in the saying “the squeaky wheel gets the grease.”

In looking over the HD landscape, I realize that what seems to be missing is a sense of urgency and a greater awareness of HD, especially compared with the quick response in creating the COVID-19 vaccine.

In the months ahead, I’ll be doing what I can, with the help of others, to generate a sense of urgency so that more people understand how many are dying from HD. We need to do more to stop this rare disease.

When a cure is found, it’ll be because enough people felt the same urgency at the same time. With that in mind, I look forward to doing what I can to help you all find a cure, and one of the biggest ways I can help is to channel my inner “wheel” and start squeaking.

Consider this column the first squeak.

Sincerely yours,

Carlos

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

Bernadette Barrett avatar

Bernadette Barrett

I applaud you!! So if this was like Covid we would be better off in a way.

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