Purple Day Utah: Faces of Utah Epilepsy

As International Epilepsy Awareness day rapidly approaches, the Epilepsy Association of Utah has compiled a video representing the many individuals in Utah living with Epilepsy. These faces are young, and not so young, brothers, sisters, husbands, and wives, they are the people we pass on the street everyday. They are as varied as the sands on a beach, and as lovely as the spring flowers now peeking from the thawing ground throughout Utah. Epilepsy awareness grows from a small seed, help us cultivate it and spread the word: You are not alone!



Thanks to our President, Kris Hansen for her hard work on this video.

Purple Day Balloon Launch 2012

FOR IMMEDIATE RELEASE

PURPLE DAY BALLOON LAUNCH SCHEDULED

SALT LAKE CITY, Utah, March 13, 2012 – In its efforts to help increase global and local Epilepsy awareness, the Epilepsy Association of Utah (EAU) will celebrate National Purple Day, held annually on March 26th, by holding a Purple Balloon Launch in Murray City. Each of the hundreds of balloon will be filled & tied with thoughts, hopes and memories of everyone, including the 50 million affected worldwide and as many as 150,000 from Utah; and then, released as a symbol of freedom and independence while each purple balloon finds its way into the world.

Date:     Monday March 26th
Time:     6:00pm
Place:    Murray City Hall Building
    5025 South State Street
    Murray, UT

Those interested in attending should meet at Murray City Hall at 6:00pm to prepare for the balloon launch. Admission is free and all ages are encouraged to participate. More information regarding this and other scheduled Purple Day events can be found on the Epilepsy Association of Utah’s website: www.epilepsyut.org

About Purple Day
National Purple Day was created by the idea of a 9-year-old girl, Cassidy Megan, motivated by her own struggles with Epilepsy. Cassidy's goal was and continues to be encouraging people to talk about Epilepsy while dismissing the myths and assuring those with seizures - they are not alone. Now every year on March 26th, people all around the world are invited to wear purple and involve themselves in events in promotional events supporting Epilepsy awareness.

About the Epilepsy Association of Utah
The Epilepsy Association of Utah provides awareness, education, support services and advocacy for and in behalf of all those dealing with the many challenges of Epilepsy/seizure disorders. More information can be found on their website @ www.epilepsyut.org

A Purple Jolt for Utah's Purple Day!

The Epilepsy Association of Utah proudly presents "Purple Jolt 2012 Benefit Rock Concert."  The performance follows the Purple Day Balloon Launch at 6:00 pm, held at Murray City Building.  The group who will be performing is Caroline's Spine, with special guest Jeremy Anderson.


About Caroline's Spine:

• Spine is an alternative American Rock band who has toured the United States and Europe with popular performing artists such as Aerosmith, Nickleback, as well as Kiss.  
• Spine is a RIAA-certified Gold and has achieve four "Top 40" rock radio hits.  
• Spine's music has been used by well-known TV networks such as ESPN, MTV, and Disney.  
• Spine is, as noted by Yamaha Music, "...one of the top 5 unsigned bands in America."

The Top Five Caroline's Spine Songs (via iTunes):

1. Sullivan
2. Attention Please
3. You and Me 
4. Nothing to Prove
5. The Light Inside

Sullivan and You and Me both come from Spine's 1997 album entitled "Monsoon."  Sullivan is reportedly the band's most popular song, due to it's accessible melody and compelling subject matter related to WWII.  You and Me starts out with a slower softer beat than Sullivan, but then turns to quicker tempo and heavier rock, it's a great song to jam out to and it seems to resonate with the frustrations rough relationships can sometimes bring.

Two years later, Spine released "Attention Please," where the tracks Attention Please and Nothing to Prove are heard.  Both tracks received high ratings on the Mainstream Rock Tracks chart at #30 and #23, respectively.  Nothing to Prove is probably a personal favorite of mine and all that I can say about it is take a listen to it below.  Attention Please, on the other hand, has a deep grungy sound whom's chorus seems to question life's train and where, as passengers, we are going.  That idea seems to ring true for a lot of people who deal with various problems, including seizures and Epilepsy.  Sometimes we wonder why it is that we have certain issues to deal with and it is, indeed, a fair question.  Until we find out why and where we are going, we can do our best to hold on for the ride.     

The last, but definitely not the least, of the top five tracks is The Light Inside from "Work It Out." It wouldn't surface until nearly a decade after Spine's aforementioned album, "Attention Please."  Nevertheless, the track definitely earned it's place among the top tracks of Spine's music.  The music is heavy with awesome beats with deep enlightening lyrics that question, and at the same time seem to encourage, the listener's ability to go on and continue to do their best despite difficulties they might experience.

Can't wait to see the band in action?  Well, the countdown is on and the concert is just days away, but until then, feel free to check out this video, from YouTube, of the group singing a song I particularly favor, Nothing to Prove.

  

Critical Info!

What: Purple Jolt 2012 Benefit Rock Concert

Where: Murray Historic Theatre 

 4961 S. State St., Murray, UT. 84107

When: Monday, March 26, 2012

Time: 7:00 pm

Tickets:

Prepaid Individual: $10

At-The-Door Individual: $12

VIP Table (includes backstage pass to meet the band, food, and private seating) $100
Buy Your Tickets Now!  

Contact: info@epilepsyut.org

Hope to see you soon for Utah Purple Day, and the Purple Jolt Rock Concert!  

Sources and Links:

Jimmy Newquist

carolinesspineofficial.com

Jeremy Anderson 

iTunes

Wikipedia 

*Caroline's Spine

*Monsoon

*Sullivan

*Attention Please

*Work It Out

Twitter 

Facebook Album Page

Facebook Musician Page

YouTube

    

Winter Rewind

It has been an exciting few months since our last post, all of the events we have held have been successful thus far.  So, lets rewind.

Fall, 2011

UEA was definitely a success, we were able to speak with many educators about Epilepsy Awareness and we invited them to join our interest lists as well as sign up for a free Seizure Smart Presentation.  As teachers and students continue to receive instruction from the presentations, they will have gained a knowledge of how to deal with seizures in the classroom.  That comes with the ability to discourage oppressive and stigmatizing actions as well as comments made by classmates, which allows students to become "Seizure Smart" as well!  Another thing that teachers are equipped with when they learn more about Epilepsy and seizures is the ability to give rescue medication, as directed, for long-lasting seizures.  Lastly, as all people gain from the presentations, they will have gained an awareness for Epilepsy and seizures, connections to activities, events and conferences the Epilepsy Association of Utah hosts, such as Whispers in the Park. 

Bounty-Hunters and little Luke Skywalker!

Whispers in the Park was our first Halloween carnival this year.  It was simply amazing how much fun everyone had.  Costumes were worn, games were played, costume contests were strutted through, prizes were won, vendors offered their items for sale, and the food was scrumptious.  A pair of Star Wars bounty-hunters even made an appearance.  A good time was had by all!  What was so awesome was that it was a festival where people with Epilepsy and seizures could come and be in a safe place to enjoy each others company.  Free from any sorts of stigma or oppression, people are were very understanding.  Through those gentle whispers, the Epilepsy Association of Utah took the superstition and mysticism out of living with Epilepsy and put those thing where they belonged: Halloween.

Kimmie at Artilepsy

 November brought a busy month for the EAU, the month of awareness began with our second annual Artilepsy art gallary.  Artilepsy is a art gallary dedicated to all types of artists who are affected by Epilepsy or have loved ones who are affected by Epilepsy.  We had a fair few people enter their artwork for Artilepsy.  We had photography, paintings, drawings, quilts, and even faberge eggs!  One of the artists, Kimmie (age 13), submitted a beautiful photo of the "Up" house and won first place in the teen photography category.  Well done!

Jenn, Jeremy, & Kris after Jeremy's comedic performance

The next day, our second annual Gala was held, this time it was at Noah's event center.  Several persons very close to persons affected by Epilepsy or affected by Epilepsy themselves spoke at the Gala, including, Dr. Afrah (a U of U Epileptologist), Glenn Fenster (Destinymaker), Mayor JoAnn B. Seghini of Midvale, the parents of Lynsay Lynch (of Laps for Lynsay), Jeremy Anderson (see right) and his comedic performance, Ryan Barnes, and two collegiate scholarship recipients as well as many others who were recognized for their service and support of the Epilepsy Association of Utah.  It was a great night to review what the EAU has been doing and it was encouraging to see how the potential for the Association is growing, as are our programs.  Thanks to the funding raised from the Gala as well as a few grants that have been awarded, the EAU is looking to start a Transportation Assistance program and Prescription Medication Assistance program.  There is even more that is being developed now, but you will just have to keep an eye out for more news!

And the morning after Gala was held, we headed up to the Univerisy of Utah's Neuroscience building for our Seizure Smart Education Conference.  Speakers included Glenn Fenster, Dr. Afrah, an AEEG specialist, Holly E. Ferrin, as well as a specialist of natural oils and their benefits with seizures and Epilepsy.  




We've got a spring that is buzzing with activities and events, including Purple Day, Caroline's Spine Concert, Crop Because You Care, and our NEW Camp Neuro Reveolution!  Be on the lookout for our next update (coming soon!).  I am sure that it will be easy to "Spring Forward" in 2012 with the Epilepsy Association of Utah!

 
"Like" us on Facebook (Epilepsy Association of UT page); "Friend" us on Facebook (Epilepsy Utah); and follow our Twitter feed for live updates!  



Thanks everyone, for your continued support!

As Autumn Approaches: Fall Into Epilepsy Awareness!

The days are growing shorter, the nights longer, the air is getting cooler, and the leaves are changing colors.  All of this indicates that we getting into the season of autumn.  As it approaches, we must remember first that November is Epilepsy Awareness Month.  A time to wear your purple proudly to promote Epilepsy Awareness as well as support any friends, family, or loved ones who deal with the effects of Epilepsy, or any other type of seizure disorder/syndrome.

Just wanted to let you know what events are coming up, within the next 30 days, to promote, celebrate, and be educated about Epilepsy Awareness.  Here is the run down, in order of appearance.

October 20th & 21st - UEA (Utah Education Association) Convention and Education Exposition

• at the South Towne Exposition Center in Sandy.
• the largest professional conference for educators in Utah
• provides dozens of professional development workshops for K-12 educators
• keynote speakers
• a New Educators’ Workshop
• the Idea Fair
• hundreds of vendor booths, including the Epilepsy Association of Utah!
• promoting awareness of Epilepsy to teachers, which will enable them with...
• knowledge of how to deal with seizures in the classroom 
• ability to discourage oppressive and stigmatizing comments made by classmates
• so other students can get seizure smart as well!
• ability to give rescue medication for long-lasting seizures
• knowledge of awareness activities, events, and conferences

October 22nd - Halloween Carnival, called Whispers in the Park 
The Annual Halloween Carnival is an awareness and fundraising campaign, held in October, to celebrate the Spirit of All Hallows Eve. Halloween is a time of celebration and superstition. Of shorter days and longer nights, of roaming between life and death. It's a time when we shed who we are and become the playful, frightening things we have always wanted to become. With gentle whispers, the Epilepsy Association of Utah is taking the superstition and mysticism out of living with Epilepsy and putting those things where they belong: Halloween.

• at West Jordan Memorial Park
• from 11:00 am to 8:00 pm
• Raffles
• Vendors
• Live Performers
• Battle of the Rockbands (the game!)
• Cake Decorating
• Costume Contest
• Games & Activities
• Photos
• and MORE!

November 3rd  - Artilepsy: Visualizing Hope

•  Free Art Galleryby people of all ages who are affected by Epilepsy.  
• With statistics of 1 in 26 people developing Epilepsy, we are all affected by it, so there is no reason to not enter in your creation, no matter the media type.  :D
• Entries due October 22nd
• Many Mediums
• computer assisted graphics
• creative arts (home crafts)
• fine arts (paint, pencil, watercolor, oils, etc) 
• music composition
• photography 
• Be sure to read through the description on the facebook page to access the entry forms and other deatils.  (Link to facebook is above.) 

 November 4th - Night Among the Stars Gala
Come and celebrate a black tie evening and dinner to help Utahn's dealing with epilepsy. Dinner will be held at Noah's in South Jordan, Utah. Tickets are available for $100/plate or $700 per table of eight. We will be also selling gold and silver dedication stars for $10 and $24 each which will hang at the gala. Let a loved one know you think they are a star!  Click on the link above to register.

November 5th - Seizure Smart Education Conference.
This is a great opportunity to come and meet with a few neurologists and find new information from the medical community. It is also a great place to get outside references. We will have the privilege of hearing from Glenn Fenster. Glenn has bicycled six times across the United States to raise awareness for epilepsy on behalf of his son and all those affected by epilepsy. 

• at the U of U Neuroscience Building
• 9:00 am to 1:00 pm
• FREE to attend 
• get seizure smart
• workshops/classes to educate yourself and others about Epilepsy. 
•  including a breakout session with Holly E. Ferrin about dealing with the social stigma and oppressive forces of Epilepsy.   

 We've got a busy autumn coming up, but with all the activities and events we have coming up, I am sure that it will be easy to "Fall into Epilepsy Awarenss!"


 Be sure to follow us on Facebook & Twitter for live updates!  



Thanks everyone, for your continued support!

Camp Video!

Yes, here it is, the video for Camp Spike and Wave 2011.  If you were there, comment with your favorite moment.   And if you weren't there, comment with some things that look exciting.  Can't wait to see you next year! 

See more posts about Camp from 2011!
Day 1
Day 2
Day 3

Coming Soon!  The Camp Spike and Wave book from 2011

contact Holly for any questions about Camp, photos, video, book, or registration! 
holly@epilepsyut.org

Thanks for your support!

Laser Ablation - Epilepsy freedom for patients?

Although this procedure will not help everyone, as many as 35% of people with Epilepsy can be helped and sometimes cured. Talk to your Doctor about it today!



Columbia University researchers state that "An estimated 1 in 26 Americans will develop epilepsy in their lifetime, a risk that translates to about 12 million people in the United States", a number that is much higher than the CDC reports.