Epilepsy Awareness Inspires a New Product Line

I have a new line of Awareness bracelets in my shop, the Mandiye. This design was a gift to a good friend of mine, Mandiye. We both work with a company that sponsors us to both speak to groups to help end the stigma associated with epilepsy.  Each year we attend a summit and that is where we met.

I will share Mandiye's complete story in another blog post.
The Mandiye Awareness bracelet features Swarovski Crystal bicones in Provence Lavender and Purple Velvet. It will be available in a silver plated and Sterling silver version.

This very special bracelet has a special purpose. There is no Epilepsy Foundation in Las Vegas, in fact, there is not one in Nevada. We currently fall under the umbrella of the Northern California Epilepsy Foundation. The profit (not a percentage or a portion, the entire profit) from the sale of this bracelet will be donated to benefit the Epilepsy Foundation of Northern California, to be used for services in Nevada.

The Mandiye will also be available in other colors to indicate support for other causes. Regardless of the color all profits from all Mandiyes will be for Epilepsy.


Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States.

Mandiye – ArtFire – Jewelry by Cheryls Purple Cow
Mandiye – Etsy – Cheryls Purple Cow Click here to read more!

Epilepsy Awareness Treasury

This is the treasury that I curated on Etsy. Click on the picture to view and comment on the Treasury.
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I curated a collection on ArtFire for Epilepsy Awareness Month. Please enjoy and help end the stigma of epilepsy.

November is Epilepsy Awareness Month

Curated By: JewelrybyCher...

ArtFire.com

Handmade Soap

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Purple Day

Cassidy

I would like to share a story with you today.  This story takes place 2 years ago and is about a young girl named Cassidy.  Cassidy, who was 9 years old at the time, has epilepsy.  But she is not the type of girl to let that get her down. 

Cassidy wanted everybody to know that she has epilepsy and that it was OK to talk about epilepsy.  She wanted to explain to people that epilepsy affects over 50 million people worldwide.  That is more people than MS, MD, Parkinson's Disease and Cerebral palsy combined.  Cassidy wanted everyone to know the truth about epilepsy and dispel some of the myths. 

It is very important to Cassidy that everyone know that people with epilepsy are ordinary people.  She also wanted other children like herself to know that they were not alone. 

March 26th - Purple Day

Cassidy was very motivated to make her wishes come true.  She decided that one way to get people talking was to ask everyone to wear purple on one special day of the year.  Purple Day was founded in 2008 by Cassidy with the support of the Epilepsy Association of Nova Scotia. Epilepsy Awareness Month is celebrated in March in most of the world.  Here in the U. S. we celebrate it in November.

From the Purple Day website,

"Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy."

 A little bit more about Cassidy in her own words from the Purple Day website.

"Before I started Purple Day, I was afraid to tell people about my epilepsy because I thought they would make fun of me. After the Epilepsy Association of Nova Scotia did a presentation in my class, I started to talk with the other kids about my seizures. That is when I decided to become a spokesperson for kids with epilepsy."

Cassidy

I am asking everyone who reads this post to wear purple on Friday March 26th.  Do it for all 50 million people in the world who have epilepsy.  Do it for Cassidy.  Do it for me.

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Epilepsy Awareness An Interview With Adrian E

I have mentioned several times that November is Epilepsy Awareness Month.  In keeping with that theme, I have been working on some interviews.  I speak publicly to help spread Epilepsy Awareness and I will be interviewing friends who do the same thing.

I met Adrian E. for the first time in March 2006 in San Antonio, Texas.  Adrian has epilepsy and he is committed to helping others with epilepsy.

 

November is Epilepsy Awareness Month and I'm hoping this picture will kick up that awareness. No, I'm not injured. It's me in 1996 at UNM Albuquerque's Epilepsy Center getting an EEG for the MEG & MR Spect research study they were doing. My participation in that study went on to provide important information about a condition that over 3 million Americans live with.

What is the "MEG & MR Spect" research study?
The MEG and MR Spec were two studies; one using the Magnetoencephalogram (MEG) and the other using Magnetic Resonance Spectroscopy (MR Spec). It was performed at the University of New Mexico Albuquerque and done in 1996.

An EEG was performed prior to the MEG to get a baseline of my brain's activity. The EEG was an "all-day-all night" version but it was to look for spike anomalies and not actual seizures. There was no need to wean off my medications for any part of these studies.

MEG is a non-evasive, clean, and painless technique of measuring electrical activity in the brain without the use of electrodes like an EEG. The test involves the performing of an MRI prior to the MEG that is longer than a routine MRI (about 90 minutes vs 45 for a routine one). This is because very fine, well detailed images of the brain are needed. The images of the MRI are combined with the data from the MEG and form a 3D EEG (so to speak).

The MEG portion involves sitting in a special room where the subject can just dose off while a cylindrical object the size of a beer keg rests on the subject's scalp. Unlike the loud noise that anyone who has an MRI can attest to, the MEG is nearly silent and lasts about an hour or two.

MR Spec is used not to get a physical image of the brain, as an MRI would, but to gather a chemical composition of what the human brain is made up of. At this facility, the MR Spec looked larger than an MRI machine and, it turns out, much louder than an MRI. The test was about as long as a routine MRI, about an hour, but industrial grade earplugs were necessary to prevent hearing loss.

Do you know how your participation benefitted others?
It's been 13 years since these studies were performed but just three years ago, researchers in San Diego were testing a new use for the MEG. The Wada test is the standard by which memory and language functions are tested for people seeking epilepsy surgery. But the Wada has some serious risks, most notable being stroke and hemorrhage of the arteries below the brain. A new function of the MEG was being tested to see if it could possibly determine memory and language function of the patient without the risks that come with a Wada test. It looks like an alternative to the Wada could come in the next decade. (BTW, I participated in that San Diego study too.)

Was there a risk?
All in all, the risks involved were so minor; I had no problem participating in these studies.
 
Do you do anything else to help support Epilepsy Awareness?
I am an Epilepsy Advocate; I am a HOPE Mentor for the San Diego Epilepsy Foundation and educate public and private entities about epilepsy. Click here to read more!

Epilepsy Awareness Month

November is Epilepsy Awareness Month.  I have been working long, hard hours on purple items for Epilepsy Awareness for my store.  I listed several last night and there are still a lot of listings to finish.  I really love the Swarovski Crystal Snowflakes that I made into earrings.  I didn't realize how beautiful they would be in Violet.

I also listed the "Debbie" bracelet.  It is made using Czech Fire Polished beads.

I also listed this anklet.

I am increasing my donation percentage for November from 10% of the sale price to 15%.  I will be donating to Nevada Family Ties.  I really like their organization.  I will write more about them in a later blog.  I will be volunteering my time to help local families affected by epilepsy.  Exciting things are happening in Nevada.  We are trying to open a chapter of the Epilepsy foundation in Las Vegas, among other things.  Since I don't believe that I will be asked to speak professionally for Epilepsy Awareness, I need to do something to help.

Keep checking my blog this month because I will be having different sales all month.  I am also going to blog about epilepsy several times this month.  I have learned so much about epilepsy since I was diagnosed 4 years ago. 

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