Coming Up: Epilepsy Blog Relay—Stigma and Epilepsy

For the past few years, the Living Well with Epilepsy blog has designated June as Epilepsy Stigma Awareness Month.  This month, they have initiated a Blog Relay in which bloggers/social media participants have been assigned a particular day to post a column about epilepsy stigma on their websites.  Then, they will connect with the next day’s website.

My blog post for the relay will appear on June 7.  Feel free to look at the postings for the entire month as it goes on.  Let me know what you think!

To follow along, use the hashtag #EpilepsyBlogRelay on Twitter or visit Facebook at http://www.facebook.com/livingwellwithepilepsy. To see the full schedule, go to http://livingwellwithepilepsy.com/epilepsy-blog-relay-2015.

I am looking forward to it.  I hope you are too!

Epilepsy Pipeline Community Conference Session video links

For the Epilepsy Pipeline Community Conference that took place on May 16, videos have been posted for all of the sessions.  Here they are for your viewing pleasure:

http://www.epilepsy.com/accelerating-new-therapies/2014-epilepsy-pipeline-conference/2014-epilepsy-pipeline-conference

Announcement: 20th Korean Epilepsy Congress Conference—June 12-13, 2015

On June 12-13, 2015, the 20^th Korean Epilepsy Congress Conference will take place at the Kimdaejung Convention Center in Gwangju, South Korea.  Among the topics covered will include gene therapy, new medications, women’s issues, and Asian regional issues related to epilepsy.

Here are the links to find out more about the conference and register:

http://epilepsykorea.org/congress/

http://epilepsykorea.org/program/sub3.php

http://epilepsykorea.org/member/?url=%2Fregistration%2Fform.php%3F&page_mode=join

I hope some of you have the chance to attend!

Asian Americans and Epilepsy

May is Asian Pacific American Heritage Month.  3 of every 200 Asian Americans have epilepsy, if not more.  Asian Americans are less likely to report that they have epilepsy than the population in general because of the stigma attached to it.   

In the Asian American community, there is probably more misunderstanding and perpetuation of myths.  Many still believe that epilepsy is caused by evil spirits and only trust so-called traditional cures:  herbal treatments or exorcism.

Announcement--Epilepsy Pipeline Community Conference 5/16/15

I came across this link about the upcoming Epilepsy Pipeline Community Conference which will take place in Aventura, Florida on Saturday, May 16, 2015 (in about a week). 

It is a free, all-day program with many epilepsy experts.  They will be speaking about issues regarding treatments (medications, surgeries and devices, marijuana, etc.) and living with epilepsy (behavior/mood, self-management and safety, and family relationships).  There will also be an opportunity to meet people and network.

Even though it is free, you do need to register.

The address for the conference is:

Turnberry Isle Miami Hotel

19999 West Country Club Drive

Aventura, Florida

I highly recommend going if you can.  If you do go, please comment and tell me your thoughts about it.

http://www.epilepsy.com/make-difference/get-involved/2015-epilepsy-pipeline-community-conference

http://www.eventbrite.com/e/epilepsy-pipeline-community-conference-tickets-15912284070

Comprehensive Epilepsy Medication List

I came across a pretty comprehensive anti-seizure medication list on the Epilepsy Foundation website.   Since most people with epilepsy take medications to treat their seizures, this resource is invaluable.  It provides the generic and brand name information about the drugs and addresses questions such as

“how does this medication work?”

“what are the most common side effects?” 

“what are the most serious side effects?”

“how does it affect women and the elderly?”

“how does it interact with other drugs?”

The list goes on and on, and covers many, many medications.

It is an excellent list for those interested in doing research on new medications.

http://www.epilepsy.com 

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/seizure-medication-list

Epilepsy Walk Report

The Sonic Seizure Stoppers!  Me, my friends Kim and Deb

The Epilepsy Walk was a lot of fun—the weather was not too sunny nor too hot, as has been the case in the past.  The emcee for the event was Executive Director of the Epilepsy Support Network Janna Moore.  She recognized the sponsors and top fundraisers for the event as well as the excellent epileptologists in the area who serve us.

She also introduced this year’s special guest, Rob Machado, super-surfer and environmental activist.  It was an honor to have him at our event this year.

She rallied the crowd and we set off walking around Tewinkle Park in Costa Mesa, California.  It is a kid-friendly park, with a safe, padded playground and a nice walking path.  After walking a round or two, many people played games at the carnival, bought raffle tickets, and/ or made bids at the silent auction.

At 11:30 am, lunch was served—either a hamburger or hotdog with beans and macaroni, a drink, and a cookie for dessert.

The event closed at 2:30 pm.  So far, $104,000 has been raised thanks to all the generous donors we’ve had. 

And if you missed out, there is still time to show your support by donating.

Thanks again for your support!