The National Walk for Epilepsy is next week , and it’s a chance for me to walk with other people, other families, that have been effected by seizures. I am lucky that my seizures can be controlled by medication, but not everyone is so lucky.

There is more research to be done, and more education needs to be done.

• It’s important to understand that some kids have to live with seizures, but they still need to, and CAN go to school.
• It’s important to teach first responders how to react to a seizure.
• It’s important to be sure that health insurance covers seizure medication.
• Medication can be made more predictable, effective and less toxic.
• And the medical community still needs to learn more about why seizures happen and what damage they do to our brains and our bodies.

So, my husband and I will be walking bright and early on a Saturday morning in March, on the National Mall.

I know that children and animals are much more compelling causes than your friend DC Grrl who seems just fine; So, here are some stories about kids and animals. These are the families we’re really walking for:

Andrew, in Fairfax: “Dog that helps epileptic boy will get 2-week tryout at school”

And a great book BY Evan, who wrote this book to help fund his own seizure dog, which I now have in my library. It is AWESOME:
My Seizure Dog

Coming soon: the Concert for Epilepsy this fall, so be on the lookout for more information about that. This guy, possibly the most excellent brother in the world, has been working tirelessly on this project for years, in honor of his little sister who has epilepsy, and this year’s concert should be an amazing event!

Interested in learning more? Here are some places to get some information: Epilepsy Foundation and TalkAboutIt

I started showing signs that I would be dealing with epilepsy for the rest of my life when I was about 16.

One thing that gave me solace was the song by Joy Division, “She’s Lost Control.”  Ian Curtis, the lead singer of the band, had epilepsy, and wrote the song about a girl having a seizure. It was nice to know someone cool has seizures too.

It’s wasn’t easy back then for me to face the fact that I need pills to make me “normal.” Other people with epilepsy need a lot more than that. Locally, there’s a little boy that’s been fighting to take his service dog with him to school. This boy has to wear a safety helmet as it is, and now he has to fight to take this dog with him to school. It looks like he and his family are winning the fight, but why should they have to fight? And that’s only one family’s story.

When Doug and I went on the National Walk for Epilepsy last year, it was energizing to see how many other stories there are out there. Seizures are confusing and discouraging, but none of us are alone.

There is a lot of research to be done, and many families’ lives would be improved with more knowledge and understanding about seizures. I’ve seen new medications released and information campaigns developed in just the past 20 years, so I have faith that there are even more significant developments to come.

And I’ve got faith in you, my friends and readers… I’m going to be there at the National Walk for Epilepsy again – two months from today – on March 27. We could use your help.

1. Help by LEARNING about epilepsy. Just click over to the Epilepsy Foundation’s website to learn something you didn’t know. That will be priceless.
2. Help by DONATING to make our short walk around the National Mall count more. Click over to my walk page, then click SUPPORT TEAM DC GRRL or MAKE A GIFT.

ALSO SEE: Why I’m walking for epilepsy

After months of fundraising, today I crossed the finish line at the National Walk for Epilepsy with my biggest supporter, my husband. It felt great to have worked for this cause that affects me every day, and to be part of this effort to raise awareness for this condition.

There were so many thousands of people there this morning, families and friends supporting each other. It was empowering. There were also NFL athletes and local and national celebrities there to help draw attention to our cause. Of course that means we grabbed some autographs and pictures, you know me!

The money we raised will go to fight stigma, raise awareness and find a cure for epilepsy. My hope is that this Walk will help bring more families closer to seizure-free lives, and help people better understand what epilepsy is all about. This year’s theme is Talk About It. There is a great new website at TalkAboutIt.org to explain epilepsy to the world. I hope you’ll check it out!

ALSO SEE: Why I’m walking for epilepsy

On Saturday, March 27, 2010, I will be participating in the National Walk for Epilepsy on the National Mall in Washington, DC.

Why? Because I was diagnosed with epileptic seizures at the age of 16. I’m lucky enough to be able to control my seizures (which generally occur at night) with daily medication, but not all people with epilepsy are so fortunate.

I have a friend suffering seizures caused as a result of a brain tumor, who is still working to find the right medication for her. I have another friend who has seizures that were triggered by her second pregnancy. Taking medication at all during pregnancy is scary, but not as dangerous as a seizure could be.

Epilepsy — which refers to a number of different seizure disorders — affects lots of people in different ways, and seizure management is a tricky business.

For me, epilepsy means daily medication which I’ve taken since I was first diagnosed (over 20 years ago). The worst thing I have suffered from a seizure is biting my tongue in my sleep. (Although that can be a pretty severe bite.) Learning I would have to take medicine to be ‘normal’ for the rest of my life was a tough thing for a teenager to get used to. But it’s not so bad.

I have been lucky to have pretty great health care, constant coverage via my parents or corporate plans, and access to top-of-the-line research hospitals to be sure I’m getting the right medicine for me. Not everyone is so fortunate. But I like to pay it forward. I contribute to websites that give me free services. And I want to help the research that has helped me. So…

The money I’m helping to raise through the Walk will go towards research for better treatments, to raise awareness and maybe even to find a cure for epilepsy. My hope is that this walk will help bring other families closer to seizure-free daily lives.

Please donate whatever you are able. I know there are many worthy causes asking for donations now, but this one affects someone you know — and maybe some other folks that haven’t had the guts to tell you yet.

Here’s my fundraising page:

Heather’s National Walk for Epilepsy PageThank you so much for your support and friendship.

In the days since Haiti’s earthquake, Americans have donated millions of dollars towards relief organizations. I’m always amazed by our generosity as a people. I’m also amazed by the new technology that emerged this time — the text-to-donate operations have been incredibly successful and easy to use. These would have been so helpful in past disasters! If you can spare a few dollars on your next phone bill:

• Text HAITI to 90999 to donate $10 to The Red Cross
• Text YELE to 501501 to donate $5 to Wyclef Jean’s Yele Haiti Fund
• Text HAITI to 20222 to donate $10 to the Clinton Foundation’s Haiti Relief Fund

If you want to donate a more substantial amount, there are a number of organizations already in operation in Haiti. This is, in my mind, the most tragic part of the disaster there. Haiti has needed our help for years. This earthquake kicked them while they were down, in a way.

• The Media Consortium explains how to help: Haiti After the Quake + How to Help
• NPR put together a great list of recommended non-profits here: How to Help.
• Huffington Post’s recommendations are here: How You Can Help

I’ve heard a number of personal recommendations for Partners in Health, so that’s where my extra pennies are going, and there is also the newly-founded Clinton Bush Haiti Fund, led by former Presidents Bill Clinton and George W. Bush.

Meanwhile, please hope, pray or and think positive thoughts about all those who are missing and out of touch with their loved ones.