Epilepsy Association of Utah

Education Conference.

Press Release: Epilepsy Association of Utah Announces “Seizure Smart” Education Conference

For Immediate Release

Epilepsy Association of Utah Announces 
“Seizure Smart” Education Conference
SALT LAKE CITY – Monday, May 19, 2014 
The Epilepsy Association of Utah (EAU) announces its annual “Get Seizure Smart!” Epilepsy Education Conference, presenting the latest in epilepsy science and treatment options, as well as tools and resources for those affected by epilepsy. The “Seizure Smart” conference will be held Saturday, June 7, 2014 from 8 a.m. to 4 p.m. at Little America Hotel, 500 South Main Street, Salt Lake City. Individuals with epilepsy, families of those affected, medical personnel, educators, and first responders, as well as the general public, are invited to attend.

Dr. Ian Miller, pediatric neurologist at Miami Children’s Hospital, international expert in treating Dravet syndrome and member of the Dravet Syndrome Foundation’s Professional Advisory Board, will be the keynote speaker and special guest. He is scheduled to discuss the discovery of genetics in epilepsy and the push for research into CBD-based treatment options.

The conference will feature breakout sessions with renowned experts presenting on topics including the complexities of epilepsy, genetics of epilepsy, latest treatment options, alternative therapies, coping and advocacy, managing behaviors and sibling behaviors, mental health, trusts and living wills and patient resources. Several organizations and vendors will be in attendance with tables providing helpful information, a few of which include the Division of Services for People with Disabilities, Hope 4 Children With Epilepsy, Utah Kids, Utah Parent Center, Autism Council of Utah and Brain Balance Centers.

With the recent passage of HB105 “Charlee’s Law” allowing for the possession of high-CBD/low-THC cannabis oil for the treatment of intractable epilepsy in adults and children, the EAU will present the specifics of the new Hemp Extract Registration Program and the safe and effective use of the therapy. Jennifer May, co-founder of Hope 4 Children With Epilepsy, the EAU’s parent advocacy group who lobbied in favor of the bill, will be walking patients through the details of the law and the processes required to gain access to approved extracts for treatment. As the leading provider of high-CBD/low-THC cannabis oil, Realm of Caring’s own Heather Jackson will present information about the oil as a treatment for intractable epilepsy. Realm of Caring is a non-profit organization in Colorado who oversees the cultivation of the Charlotte’s Web plant and its processing and distribution as Alepsia, a non-psychoactive extract infused in oil.

“Our goal with the Seizure Smart Epilepsy Conference is to provide those affected by epilepsy with the tools needed to educate themselves, as well as those around them, and obtain the best treatments possible, whether they be mainstream or alternative,” said April Sintz, EAU Conference Chairperson and H4CE leadership member. “We want to empower people by giving them choices and resources that are available to all of us here in the state of Utah,” Sintz stated.

Cost for the conference is $30 for the public ($15 for EAU members) if registered in advance; an additional $10 charge will apply for those registering at the door. A light breakfast, a catered lunch, and a “loot bag” will be provided for each attendee. Registration is open on the EAU website at http://epilepsyut.org/conference2014.html.

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. One in 26 people will develop epilepsy at some time in their lives, totaling over 100,000 people in Utah alone. Epilepsy is the fourth 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://epilepsyut.org for additional information. 

Media Contact: Jennifer Hardy May 
Email: info@epilepsyut.org 
Website: www.epilepsyut.org 

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.  😀
  • 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!