Thanks to everyone who participated in the Linkup

The epilepsy linkup was a success the first time out of the gate. Thanks to all of you who participated, I hope you saw new visitors as a result. I will run another linkup next Thursday but I hope more epilepsy organizations will take advantage of the opportunity.

If you participated, comment here to let us know if you saw an increase in traffic.

Epilepsy Bloggers Linkup

I’m going to try something new, a linkup. If it works I’ll bring it back each week. I’m hoping that epilepsy bloggers and other sites promoting epilepsy awareness with take advantage of this opportunity to connect.

Here’s how it works:
1. Start by entering the name of your site in the field titled: your name.
2. Enter the URL for your site.
3. Follow Living Well and any other sites listed that interest you.
4. Add a comment below so Living Well can follow you back.

Let us know if you like this!

It’s time to bang the drum: Research on epilepsy is needed

Last year I ran a story titled, the squeaky wheel gets the research dollars. I was trying to determine where all that research money goes when it doesn’t go toward epilepsy. After reviewing last year’s data it became clear that research money allocation doesn’t have much to do with the prevalence of a disorder, or even the mortality statistics, it is based heavily on who has the loudest voice when it comes time to ask for money.

NIH Data
The NIH releases a report each February which provides detailed information on which diseases and conditions would receive how many millions of dollars in research funding. This information is available to the public and easily searched.

You can check out the full report here or you can take a look at the excerpted information below. As I did last year, I’ve pulled together information on research dollars allocated, prevalence, and new cases below so you can see the comparison to epilepsy.

2011 Numbers
Research dollars in millions
Epilepsy 
Estimated in 2011: $134
Estimated in 2012: $137
Prevalence: 3 million in US (50 million worldwide)
New Cases: 200,000 new cases each year in US
Deaths: 45,000 in US each year

Breast Cancer
Estimated in 2011: $763
Estimated in 2012: $778
Prevalence: 2.6 million in US
New Cases: 200,000 new cases
Deaths: 45,000 in US each year

Autism 
Estimated in 2011: $160
Estimated in 2012: $163
Prevalence: 1 in 110 children age 8 (no total number has been confirmed)
New Cases: 40,000 new cases each year in US

Stroke
Estimated in 2011: $337
Estimated in 2012: $343
Prevalence: 5.8 million in US
New Cases: 500,000 new cases each year in US

Alzheimers
Estimated in 2011: $450
Estimated in 2012: $458
Prevalence: 5.3 million in US
New Cases: 500,000 new cases each year in US


The time is now
Last year I noted that it’s time to allocate some time, effort and dollars toward epilepsy. Well, yes, but that will never happen until we get out there and start banging the drum that the research is needed. We can’t hide behind stigma any longer if we ever expect the research dollars to increase. So get out and participate. The time is now.

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 14, 2011.

Get ready for Purple Day on March 26, 2011

Cassidy In 2008 Cassidy Megan, a little girl with epilepsy, came up with a colorful idea to raise epilepsy awareness. Her goal was, and still is, to get people talking about epilepsy in hopes that this would dispel myths and inform those with seizures that they are not alone. This little girl’s idea has become a global phenomenon and on March 26 you have a chance to participate.

Purple Day goes global
The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy’s idea. Then in 2009, the New York-based Anita Kaufmann Foundation and Epilepsy Association of Nova Scotia came together to take Purple Day to the international community. This nine-year-old girl is proof that an idea can become an international movement.

Purple Day 2011

Planning for Purple Day 2011 is now underway. For more information on how you can get involved, visit the Purple Day website. There are ideas, posters, t-shirts, earrings and more. All proceeds support the Global Purple Day Planning Committee’s continued epilepsy awareness initiatives!

Purple tweets
Another way you can participate is to send a tweet that reads: “Visit http://www.purpleday.org to learn more about #epilepsy.”

Questions?

If you have a suggestion or question for the Purple Day people? Email them at partners@purpleday.org.

Let us know what you are doing for Purple Day.

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