Squeaky wheel gets the research dollars

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Where does research money go when it isn’t put toward epilepsy? Obviously in these trying economic times those dollars are spread thin. But I thought it would be interesting to look at which areas are benefitting most. NIH released a report in February providing a detailed account of which diseases and conditions would receive how many millions of dollars in research funding.

To give some perspective on the dollar amounts, I have gathered prevalence and new cases data on several diseases and conditions that are worth comparing to epilepsy.

Research dollars in millions
Epilepsy $135
Prevalence: 3 million in US (50 million worldwide)
New Cases: 200,000 new cases each year in US

Autism $143
Prevalence: 1 in 110 children age 8 (no total number has been confirmed)
New Cases: 40,000 new cases each year in US

Stroke $347
Prevalence: 5.8 million in US
New Cases: 500,000 new cases each year in US

Alzheimers $480
Prevalence: 5.3 million in US
New Cases: 500,000 new cases each year in US

Breast Cancer $765
Prevalence: 2.6 million in US
New Cases: 200,000 new cases

You will notice that the squeaky wheel is not as squeaky as we thought. Maybe its time to allocate some time, effort and dollars toward epilepsy.

Sources for prevalence information: NINDS, CDC, NIH
Source for funding information: NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) published February 1, 2010.

Did Emily Dickinson have epilepsy?

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In a much talked about biography of Emily Dickinson, Lives Like Loaded Guns, Lyndall Gordon poses the question, “Did Emily Dickinson have epilepsy?”

According to Gordon, a senior research fellow at St. Hilda’s College, Oxford, Dickinson is both ambivalent and truthful about what she calls her sickness. Gordon says, “Her handicap or whatever we want to call it was connected with her visionary life.”

Dickinson says in one of her poems,
‘My lost by sickness — Was it Loss? / Or that Etherial Gain — / One earns by measuring the Grave / Then — measuring the Sun —’

Listen to the interview with Terry Gross on NPR’s Fresh Air

Read the interview

Read an Excerpt

Up Next: Where are all those epilepsy research dollars going?

Sudden unexplained deaths in epilepsy

This article was originally published in 2010. As of December 2013 estimates of SUDEP, are closer to a range of 5.5% – 18%.


What is SUDEP?

According to the Danny Did Foundation, Sudden Unexplained Death in Epilepsy (SUDEP) refers to the unexpected death of a seemingly healthy person with epilepsy, where no cause of death can been found.

Recent SUDEP Articles

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I knew the dog would not be a good running partner, but she was a good excuse to get outside. That turned into more of a run/walk/sniff/stop/bark at other dogs/walk/sniff/run/walk. This was not what I... Read More

Original Article (2010)

Epilepsy is not that serious, right? I mean, its not like you can die from it or anything. Right?

According to the American Epilepsy Society, “it is very uncommon but not unheard of for people to die with a seizure.”

I suspect that the families that have lost a loved one to SUDEP or Sudden Unexplained Death in Epilepsy might have a different opinion.

‘Rare’ and ‘very uncommon’ are what patients hear from medical professionals when they ask the question, “Can I die from epilepsy?” But after having epilepsy for years, I just didn’t believe that the odds were in our favor, considering 3 Million people in the USA have it (and 60 mil in the world). So I did a little digging.

It didn’t take much. I quickly found that the AES considers ‘very uncommon’ to be the approximately 45,000 deaths each year.

According to the Epilepsy Foundation of America, about the same number of people die each year from seizures as die from either breast cancer or traffic accidents.

Yep, you read that right. Breast Cancer or Traffic Accidents. And really, how often are we walking to raise money for epilepsy or passing laws to fight for all those people dying from seizures?

Like I said the odds are not in our favor, there are more people in the USA (3 million) with epilepsy than there are people living with:

Autism (1.5 million)
Parkinsons (1.5 million)
MS (400,000)

So, now you know epilepsy’s little secret. But what can you do? Well, start by talking about it. Below are some sites you can visit that are talking about epilepsy.

Talk About It

For more startling statistics read Jon Meacham’s article in Newsweek titled “A Storm in the Brain“. Or click on
Epilepsy By the Numbers


As of 2016 the American Epilepsy Society and the Epilepsy Foundation have joined forces with the NINDS, CURE, and Danny Did Foundation among other family foundations to raise awareness of SUDEP in a variety of ways including a Partners Against Mortality Conference.