Meet an incredible Epilepsy advocate…a Mom who lost a child to Epilepsy.

So often, we all get wrapped up in communicating through social media outlets and spreading the word about Epilepsy via chatrooms. Are we caught up on the news about the disease?

My Grandma, despite her toughness, had a remarkable capacity for understanding Epilepsy…my Epilepsy.

We just returned from the National Walk for Epilepsy, held this past weekend in Washington DC. WHAT A DAY! I think it can sometimes be overwhelming and downright emotional, particularly for my tiny family, when you realize that thousands of people…many with Epilepsy, many supporting family-members who live with the disease, care enough to walk for this cause, and contribute much-needed funds.

We are on our way to Washington DC, to participate in the National Walk for Epilepsy, set for tomorrow on the Mall. It will be both memorable and emotional for those of us who live each day with this somewhat unforgiving and usually misunderstood disease.

Perhaps one of the greatest mysteries surrounding Epilepsy and seizures is SUDEP or Sudden Unexplained Death in Epilepsy. There is no known cause and like Epilepsy itself, no cure.

Much of America has watched with keen interest as the Healthcare Reform Bill was voted on in the House, but perhaps those of us with Epilepsy…and those who are caregivers to someone living with Epilepsy, have an even greater interest.

This is a big week in the Epilepsy World…at least for those who would like to show support for the changes that could come with greater funds for research. Wear Purple on Friday, March 26th to show your support for more Epilepsy research.

How can you help those who will be diagnosed with Epilepsy just this year? Statistics show 200,000 people will be diagnosed in 2010. Those of us who live with the disease each day know what we are dealing with…but how about those ‘newbies’ to this life?

As someone living with Epilepsy, I never truly understood what connection meant or how much it could do in terms of outreach and support until I experienced it.