Pretty in....Purple!

It's one thing to wear purple, it's quite another to be Purplelicious! Do you have what it takes to strut your stuff and show the world your fashionista? Maybe the Purplelicious Pageant is for you! Application deadline has been removed.

What:   Purplelicious Pageant
When:   September 15, 2012
Where: Best Western Cotton Tree Inn
            Sandy, UT
Time:   9:00am - Registration
           10:00am - Pageant

The Purplelicious Pageant is the brain child of Patty Gannon and her Granddaughter, Courtnie Bartholomeusz. Patty and Courtney are working to get the word out that Epilepsy is nothing to be feared, it is something you have, not something that has you. Be prepared, not only should you be lovely, you have to be lovely IN PURPLE. That's right, it's Purplelicious!

The EAU salutes Patty and Courtney and thanks them for raising awareness, one glittery fabulocity at a time!

Visit Purplelicious Pageant Application to download your application today!

Dr. Charlotte Dravet to Visit Salt Lake City

FOR IMMEDIATE RELEASE



DR. DRAVET TO VISIT SALT LAKE CITY: REACHING OUT TO THOSE AFFECTED BY EPILEPSY

Salt Lake City, UT June 21, 2012 – At the invitation of the Epilepsy Association of Utah, world renowned French Epileptologist, Dr. Charlotte Dravet, will visit Salt Lake City on August 15-18, 2012. Dr. Dravet has agreed to meet patients affected by Dravet Syndrome, a rare form of Epilepsy named after her research efforts. Patients are invited to meet one on one with the doctor on Monday, August 13. Dr. Dravet will also be presenting an “Introduction to Dravet Syndrome” on August 14 from 9 – 11am for all medical professionals wanting to attend. Please RSVP to this event by visiting www.epilepsyut.org/dravet_registration.html.

“The opportunity presented to the people and medical community within Utah is unparalleled”, said Kris Hansen, President of The Epilepsy Association, “Never before has the Epilepsy Community in Utah had the occasion to meet someone of her caliber. We are honored that she agreed to spend so much time here. It’s a once in a lifetime chance”.


Schedule of Meetings/Events

Monday, August 13:
9:00am – 4:00pm     Patient Visits at University of Utah


Tuesday, August 14:

12:00pm                  Lunch – By Invitation Only
2:00pm                    University of Utah Research Lab Tour
7:00pm                    Dinner with Dr. Dravet - A minimum donation of $75.00 a plate is suggested

Wednesday, August 15:
10:00am                   Lecture at University of Utah - MD only

If you would like to participate in any of these events or have any questions, please contact:

Jenn Whiting
jenn@epilepsyut.org
or
Kris Hansen
kris@epilepsyut.org

(801) 566-5949



ABOUT DR. DRAVET


Dr. Charlotte Dravet was mentored by Dr. Henri Gastaut (Lennox-Gestaut Syndrome) at the Centre St. Paul in Marseilles. Her interests were focused towards the explanationof syndromes in childhood Epilepsy, the psychological consequences of Epilepsy, the progressive Myoclonus Epilepsies and their genetics, the congenital malformations of the offspring of Epileptic women and related studies. Her main contribution was in Myoclonia Epilepsy; with emphasis on benign and severe Myoclonic Epilepsies in infancy. Dravet Syndrome, is now recognized as one of the most malignant syndromes at this age and is widely studied by other authors and clinicians as well as geneticists.

According to Davet.org, “Dr. Charlotte Dravet first described Dravet syndrome in 1978 as Severe Myoclonic Epilepsy of Infancy (SMEI). The first seizures usually happen before one year of age, with no known cause other than fever or illness. Seizures progress to be frequent and do not respond well to treatment. They also tend to be prolonged, lasting more than 5 minutes. Other types of seizures, which are common in Dravet Syndrome, appear in early childhood, including myoclonic seizures, atypical absence, complex partial seizures and nocturnal seizures. Estimates of the prevalence of this rare disorder range from 1:20,000 to 1:40,000 births.”

Dr. Charlotte Dravet has been President of the French League Against Epilepsy and a member of the Commission on Classification of Epilepsies of the ILAE. She has participated in numerous congresses, lectures and is the author of a number of published works. Now retired, she continues to work in France and Italy to improve the care of people with Epilepsy.

ABOUT THE EPILEPSY ASSOCIATION OF UTAH
Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 150,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp, and more. Visit http://www.epilepsyut.org for additional information.


Press Contact:     Lindsey Palmer
Email:                lindsey@epilepsyut.org
Website:             www.epilepsyut.org
                          www.dravet.org

Register for Camp Neuro Revolution

WHAT:

Camp Neuro Revolution (previously known as Camp Spike and Wave) is a camp for youth with Epilepsy (seizure disorders).

WHEN: 

 Camp will be held from Wednesday, July 18th to Saturday, July 21st.

WHERE:

Camp is located in Park City, Utah, at the National Ability Center.

APPLY NOW!

Please fill out the form below to the best of your ability to ensure a spot at Camp for your child - a time stamp* is included upon your submission and beds are limited!

Your submission will be outputted to a spreadsheet that is directly associated with this Google Form.

Please note that the EAU will not distribute or sell any of your information that you submit.

MAIL-IN OPTION & OTHER CONCERNS:

If you would prefer to mail in the basic application (similar to the questions below) have any questions or concerns please contact Holly E. Ferrin

• via text/voice: (801) 931-9629
• via email: holly@epilepsyut.org

*NOTE: This year's registration is on a first-come-first-serve basis so save your child's spot and apply now!  Additionally, please note that there will be other paperwork you will need to fill out prior to the first day of Camp, which includes release forms, medical forms, as well as information forms for the National Ability Center. 

Additional Note:
SPONSORS, VOLUNTEER STAFF, NURSES, AND INTERPRETERS ARE NEEDED!
Please email Holly for more information on how you can help Camp Neruo Revolution be a success.

• holly@epilepsyut.org

Camp Neuro Revolution 2012 - Preview: The Cargo Net

Get ready for a Camp for youth with Epilepsy that has been Revolutionized!

The Epilepsy Association of Utah (EAU) presents a preview of one of the high ropes course elements you can expect to participate on when you come to Camp Neuro Revolution (formerly known as Camp Spike and Wave).

Camp Neuro Revolution is a 4 day, 3 night summer camp for the youth of Utah ages 10-18 who have Epilepsy or seizure disorders. It is located in spacious and glorious Park City, Utah, at the National Ability Center. 

Register Today!

To get more details about Camp, such as cost, paperwork, as well as other concerns, please contact our Camp Director, Holly E. Ferrin

• Phone: (801) 931-9629
• Email: holly@epilepsyut.org

Click here to see videos, pictures, and blog posts about our previous year of camp.

Find the EAU on Twitter @EpilepsyUTAH

Find the EAU on Facebook @Epilepsy Utah, as well as @Epilepsy Association of UT

The Epilepsy Association of Utah's Website: www.epilepsyut.org

Crop Because You Care 2012: Preview

The Epilepsy Association of Utah (EAU) presents a preview of the 11th annual Crop Because You Care fundraiser.



Do you like to scrap-book? Do you, or does someone you know, have epilepsy? Do you like gettin' crafty for a cause? Well then, the 11th annual Crop Because You Care is the place to be for you. 


"Crop the day away with your friends and family, get great ideas from the other scrappers, and learn from some of the best. A great excuse to get out and be creative! Entry price is $25.00 for the all day pass... Enjoy up to 12 hours of demonstrations, vendor booths, speakers, and creative fun. Bring your supplies and pictures along with any ideas you'd like to share"

Here are some comments that were made on the Crop Because You Care Facebook page in reference to CBYC 2010:

Nadine Jones Anderson said, "My sister and I have come for the last 8 years (I wish we new about it one year sooner!) and my daughter has benefited by attending camp twice! Thanks so much!"

Alina Dannette Burk said, "I get so excited every time CYBC comes around! I have attended every year since it began 9 years ago. I simply cannot imagine missing this event!"

Cindee Stoker Nielsen said, "My sister, mom and I have been coming to CBYC every year since it started. This year Mom has to drive four hours to get here, but we'll still be there - thanks for providing us the opportunity to get together and enjoy our favorite hobby."

The above comments are just a few of the great things heard about CBYC, if you can't believe it, come and see for yourself, this year on April 28th, 2012 at the South Towne Expo Center!

If scrap-booking isn't your thing, you can still get involved with this great cause. "The crop... has raised thousands of dollars to help the Association provide services to people dealing with the many challenges of epilepsy." If you would like to donate items to be raffled, auctioned, or if you would like to be a sponsor of this year's Crop Because You Care you can contact the EAU's office, at (801) 566-5949 or Bethany at bethany@epilepsyut.org.

For more information regarding sponsorship and donations (as well as a lot of other information) you can visit the Crop facebook page and/or the web-page within the epilepsyut.org website.


http://www.epilepsyut.org/events.html



Find the EAU on Twitter @EpilepsyUTAH

Find the EAU on Facebook @Epilepsy Utah, as well as @Epilepsy Association of UT

The Epilepsy Association of Utah's Website: www.epilepsyut.org

Purple Day Utah 2012: Reviewed

Family, Friends, Epilepsy Warriors

 Purple Day Utah was, in a word, amazing.  We must first thank everyone who helped set things up, participate and attend, as well take down.  The Epilepsy Association of Utah would not be the way it is today without YOU! 

The Salt Lake Tribune features Brittany M. and others sending off balloons for Epilepsy Awareness in Utah

Did you know that a photo of the Launch made it to the front page of the Utah section of the Tribune?  So exciting!  Thanks goes out to our new board members, Angela and Greg Green for sharing it with them.  We are also grateful that the weather was fairly cooperative.  It might have been a bit disastrous to launch those balloons in blistery, windy, wet weather!

Lift Off!

It was a special moment when we witnessed those balloons raise up into the sky.  It was seemingly symbolic - the way that we let go of them and watched them go higher and higher into the atmosphere - almost as if we let go of any problems that may have been weighing us down at that time.  It was a time to reflect and remember, a time to renew how we will continue to wear purple proudly.  By so doing, we can promote awareness, and education of what Epilepsy is and how to cope with it.

Caroline's Spine Performs!

Soon afterward, the event of the evening began to unfold.  Jeremy Anderson started off the night with his comedic talents, which then wittingly led to Caroline's Spine performance.  They are an awesome group to listen to, as well as observe.  They put passion behind what they play and the audience could feel it.  During the second half of their performance, lead singer, Jimmy Newquist invited the kids up on stage.  They loved it.  We saw them jamming out to Spine's music, following the beat of the drums and fast guitar strums.  While hearing their top song, "Sullivan," live gave us all chills, another moment to remember was when the band had everyone sing "Over the Rainbow."  It turns out that Newquist and Caroline's Spine will be returning soon to Utah.

Jimmy Newquist plays "Over the Rainbow" while the kids and audience sings along.

We are so very excited at the prospect of seeing them, hearing their music, and feeling their energy.  Thanks so much for coming to help with purple day, Caroline's Spine!        

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.