Chandra Hoffman features Living Well With Epilepsy on her blog

Chandra Hoffman, author of Chosen, is featuring a piece of mine and Living Well with Epilepsy on the new Wednesday Writers section of her blog.

Since graduating from Cornell University, Chandra has been an orphanage relief worker in Romania, a horse trainer in the Caribbean, a short order cook in a third world hospital, the director of a US adoption program and an event planner for Philadelphia’s Mainline elite.

Her debut novel, Chosen, uses the domestic adoption scene of Portland, Oregon as a backdrop to pose the questions What happens when you get what you thought you wanted and How far would you go if it might not be what you want anymore?

Here is a snippet of my piece on why blogging is not just blogging:
…Surprisingly, establishing these one-to-one relationships has become the most important component of this whole blog thing. I regularly reach out to folks who have a vested interest in anything remotely related to my topic. I reach out to offer these people and organizations a chance to promote their product or service on my blog (and I write the content). This is a win-win situation. Who wouldn’t want a chance to get free PR and the only work involved is to say yes. More

I hope you will check out Chandra’s blog. Let me know what you think about my take on blogging. Is your approach to social media similar or different?

Puppies that are making a difference

As part of their Epilepsy Awareness Month activities, the folks at UCB presented Canine Assistants with much needed supplies collected through a company wide donation drive. The supplies were presented to Canine Assistants at their graduation in support of their seizure response dogs.

Canine Assistants is a non-profit organization that helps people with disabilities, including epilepsy, lead more independent lives by providing them with service dogs.

These dogs are adopted from various organizations and selectively screened for personality, temperament, and general health. Seizure response dogs are specially trained to remain next to a person during a seizure, summon help, or retrieve a phone prior to a seizure.

The cost of one service dog is nearly $20,000, which covers the in-depth training, ongoing support and veterinarian care for the life of the dog. But the benefits could outweigh the cost since, certain dogs may even develop the ability to predict and react in advance to an oncoming seizure once they are placed with their recipient.

For more information on Canine Assistants visit their website or view the documentary on PBS which includes interviews with trainers, the executive director and the recipients.

Let us know what you think about the idea of a canine assistant to help people with epilepsy. And what are your thoughts on the cost?

Are you seizure smart?

During National Epilepsy Awareness Month, the Epilepsy Foundation is asking everyone to Get Seizure Smart. It’s time to make sure we know all we can about seizure first aid, recognition of seizures and the different types of seizures.

Epilepsy affects people of all ages and races, and represents one percent of the population in this country—nearly 3 million people. And if you take a look at the global picture, were talking about 50 million people.

So, what would you do if you saw someone having a seizure? Take the Get Seizure Smart quiz, and find out just how seizure smart you are.

Take the Quiz!

Shining a spotlight on Dravet’s Syndrome

Our last post provided you with information on a project called Joey’s Song. The project was created after Joey Gomoll succumbed to Dravet (pronounced Dra-vay) syndrome. This rare form of epilepsy robbed Joey of most of the ability to speak, but it didn’t stop him from communicating with everyone he met – and it never prevented him from laughing, smiling, singing or dancing. Since Dravet syndrome is so rare we felt it was important to dedicate a post to raising awareness on this devastating form of epilepsy.

What is it?
Dravet syndrome is sometimes referred to as severe myoclonic epilepsy of infancy (SMEI). It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5. Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.

What can you do?
Seizures in Dravet syndrome are difficult to control, but can be reduced by anticonvulsant drugs. A ketogenic diet, high in fats and low in carbohydrates, can also help. For more on the Ketogenic Diet and how it is being applied read the story from the New York Times called Epilepsy’s Big Fat Miracle.

What can happen?
As children with Dravet syndrome get older, their decline in cognitive function stabilizes, and in many, it improves slightly. However, most teenagers with Dravet syndrome are dependent on caregivers.

What research is being done?
Study of the genetics associated with Dravet Syndrome and related disorders is being conducted through NINDS and is expected to lead to the development of effective therapies.

For more information
For more information on Dravet’s Syndrome here are some resources:

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