Get Seizure Smart! Educational Conference(s)

FOR IMMEDIATE RELEASE

Get Seizure Smart! Educational Conference now held at two locations in Utah!

SALT LAKE CITY, Utah, April 5, 2013 – “Education is the most powerful weapon which you can use to change the world.” ― Nelson Mandela

Back by popular demand, and expanded by overwhelming response, the 6^th and 7^th Get Seizure Smart! Educational Conference will be held this year, kicking off in Salt Lake City this May. The Epilepsy Association of Utah (EAU), along with Doctors from the University of Utah are happy to present this conference, free of charge, to assist in helping further the understanding of epilepsy, its history, diagnosis, treatment and daily living with the condition.

Held annually in Salt Lake City for last 5 years, the EAU recently received outstanding interest in expanding the Conference in the St. George area.

“After meeting with several interested parties and Neurologists in St. George, it became very apparent that this Conference would also need to be held in that area,” said Jenn Whiting, Executive Director of the Epilepsy Association of Utah, “ With the support of so many people, and the request of even more, we would have been remiss to not engage the Conference Committee in establishing a bi-annual Conference at these two locations”.

After the Board vote to expand the conference, it was decided to move the Salt Lake Conference from chilly November to blissful, early May. The November date will still be used for the St. George event when the weather is more temperate.

Date:     Saturday May 4th, 2013 Time:    9:00am- 3:00pm Place:    University of Utah              Clinical Neurosciences Center Auditorium, Level 1 175 N Medical Drive East Salt Lake City, Utah 84132

   Schedule: 8:00 – 9:00am – Registration

     9:00 – 9:15am – Welome

     9:15 – 10:00am – Dr. Pegah Afra - Epilepsy 101

     10:00 – 10:45am – Dr. Helen Barkan – Treatment Options

     10:45 – 11:00 am – Morning Break

     11:00 – 11:15am – Ambulatory Neurological Services - EEG

     11:15 – 12:00pm – Dr. D. Corydon Hammond – Neurofeedback

     12:00 – 12:30pm – Lunch

     12:30 – 12:45pm – Cyberonics – Vagus Nerve Stimulation (VNS)

     12:45 – 1:15pm – Dr. Kenneth Oliver – Chiropractic Neurology

     1:15 – 1:45pm – TBD – Depression and Epilepsy

     1:45 – 2:00pm – Break

     2:00 – 2:30pm – Attorney Jared Allebest – Employee Rights

     2:30 – 3:00pm – Panel Q & A

                    3:00pm – Closing Remarks              

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 100,000 people in Utah alone. Epilepsy is the 4^th 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.

Press Contact:        Lindsey Palmer

Email:                    lindsey@epilepsyut.org

Website:                www.epilepsyut.org

Calling All School Nurses!

FOR IMMEDIATE RELEASE

The Epilepsy Association of Utah is hosting a “Managing Students with Seizures” training program.

SALT LAKE CITY, Utah, April 3, 2013 - The National Association of School Nurses and the Colorado chapter of the Epilepsy Foundation have extended an invitation to the Epilepsy Association of Utah and Utah School Nurses to participate in a training for school nurses in managing students with seizures.  

ABOUT MANAGING STUDENTS WITH SEIZURES

The training will be held on Saturday, April 27th 2013 from 10:30 am until 2:00 pm at the Huntsman Education Auditorium in Salt Lake City's LDS Hospital.  When you attend, you will learn several things; The impact of seizures on learning and behavior; Current treatment options and their side effects; Simple strategies for creating a more positive and supportive environment; Critical issues related to medication administration and delegation; Key components of a seizure action plan; Appropriate first aid for all seizure types; the essential elements of seizure training for school personnel; steps you can take now to help maximize educational and developmental opportunities for students with seizures.  With this training comes lunch, a presentation toolkit, and 3.2 CEUs through NASN.  

Space is limited so please register for the Managing Students with Seizures training with the Epilepsy Association of Utah today!  Click here to fill out the online registration form, or copy and paste the following URL: http://epilepsyut.org/registration_training_2013.html 

Please submit your registration and payment by Friday, April 19, 2013.   

Contact: Holly E. Ferrin

Email: holly@epilepsyut.org

Phone: (801) 931-9629

Website: http://epilepsyut.org/events2013MSS.html

A Statement of Support

Recently, a local Syracuse restaurant has come under scrutiny for refusing to allow a Service Dog entry during business hours. It is unfortunate that this situation has occurred, and that the establishment is claiming that the dog’s Owner, Alicia Wilson, is not presenting a truthful account of the circumstances.

While we have no interest in calling out the guilty party, The Epilepsy Association of Utah would like to extend our support and understanding to Alicia and wish her only the best in our mutual effort of raising awareness about seizures and the service animals that assist person’s affected by them.

It is no small or trivial matter that Ms. Wilson brings this to the public stage. Epilepsy and seizures are not only misunderstood but the person affected by them can be stigmatized and even ostracized. Her bravery in making the simple statement that she has seizures is applauded by the Association and all those that know how potentially harsh the reaction can be.

The comments made on this article, by the public at large, show this reaction in the harshest light: apathy, mockery and ignorance. The Epilepsy Association is both saddened and angered by these heartless comments and are reaffirming, with this letter of support, that we will continue the fight to raise awareness. We will continue to offer assistance to those in need and we will always shine a light on the stigma associated with seizures! We will not stop until all persons with epilepsy and seizures are accepted and not ridiculed for speaking up on their own behalf.

We say: Well done Alicia! For living your life and not backing down!


Board of Directors
The Epilepsy Association of Utah



The original story can be found at: http://www.sltrib.com/sltrib/money/55976019-79/wilson-service-dog-ruby.html.csp

Donavon Frankenreiter to Play Epilepsy Awareness Concert

FOR IMMEDIATE RELEASE

Donavon Frankenreiter to play at upcoming Candlelight Concert for Epilepsy in line with Purple Day activities.

SALT LAKE CITY, Utah, March 6, 2013 -  The Epilepsy Association of Utah (EAU) is pleased to partner with the Candlelight Concerts for Epilepsy Awareness, to present musician Donavon Frankenreiter.

Visit www.donavonf.com for additional info

The EAU is proud to be a part of this awareness and fundraising campaign and are excited to hear Frankenreiter at The Depot on Sunday, March 24th! Doors open at 7:00pm and the concert begins at 8:00.

Candlelight Concert organizer, Eric Miller tells us that "Donavon has let us set-up and distribute our information about epilepsy at three of his shows [Salt Lake City, Jackson Hole, and Boise]!!!  Thanks to Donavon, his team and the venue for letting us spread awareness, raise some money and fight the stigma around epilepsy!"  Miller went on to say this about the EAU: "This fine organization has been serving end educating Utah about epilepsy for 40 years! Thanks for all you do, and I'm honored to have aligned with you for this cause!"  

Tickets can be purchased through Smith's Tix at http://smithstix.com/events/item/root/the-depot.


ABOUT CANDLELIGHT CONCERTS FOR EPILEPSY AWARENESS

50 Concerts in 50 States for Epilepsy Awareness.  Partnering with the largest non-profits in the world of epilepsy, Candlelight Concerts for Epilepsy Awareness is proud to announce the first nation-wide epilepsy awareness endeavor – 50 Concerts in 50 States. It’s a network of coordinated live events over one weekend in March 2013.  Candlelight Concerts, along with Epilepsy Foundation (www.EFA.org), CURE: Citizens United for Research in Epilepsy (www.CureEpilepsy.org), Team Epilepsy (www.TeamEpilepsy.com) and Doose Syndrome Epilepsy Alliance (ww.DooseSyndrome.org), are standing united to raise epilepsy awareness on this single weekend in March.

Be sure to visit Candlelight Concert's Facebook page!
http://www.facebook.com/CandlelightConcert

At each event, volunteers will be present to distribute information regarding epilepsy (a 16 page book prepared specifically for these events), provide access to services, answer questions and raise donations – all of which will go directly to the charity of the donor’s choice.  Events will vary in size from intimate house concerts with 20-40 attendees to 18,000+ seat arena shows with nationally known touring artists. Artists from all genres – classic rock, folk, jazz, singer/songwriters, orchestras, electronic, comedians, plays
and more. All with the same objective, to distribute information and raise epilepsy awareness. All genres, all volunteers involved with the singular purpose to change the way the world sees and understands epilepsy.

This national network of events grows out of Candlelight Concerts for Epilepsy Awareness – a webcast house concert series based in Pennington NJ. Started and run by Eric Miller, whose wife Carolina, passed away in August 2011 at the age of 25 as a result of epilepsy. Since that time, Eric has worked tirelessly to raise epilepsy awareness in her honor and in honor of all those living with or lost to epilepsy. The series has featured such amazing artists as Corey Glover of Living Colour, Eric Bazilian, Chris Barron, The Young Dubliners, Dan Reed, Mary Fahl, and many others. This network of events takes that
model and raises it to a national level on a single weekend.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://epilepsyut.org for additional information.

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

EAU has been pinned!

FOR IMMEDIATE RELEASE

EAU Pinterest-ed!

SALT LAKE CITY, Utah, March 4, 2013 – The Epilepsy Association of Utah is expanding their Social Media presence even further by joining Pinterest as Epilepsy Utah.

“Pinterest has become a vehicle through which we share our common ideas and goals,” said Holly Ferrin, AVP of Programs and Services. “ With that knowledge, we are better able to share the facts about epilepsy as well awareness for epilepsy in an engaging and graphically pleasing manner. Pinterest is the perfect tool to share creative ideas about living with and educating oneself about epilepsy without the traditional intimidation of such a harsh condition”.

The EAU can be followed at: http://pinterest.com/epilepsyut73/

ABOUT PINTEREST

Pinterest is a tool for discovering things you love, and doing those things in real life. Ben Silbermann, Evan Sharp and Paul Sciarra co-founded our site in March 2010. Since then, we’ve helped millions of people pick up new hobbies, find their style and plan life’s important projects.

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://epilepsyut.org for additional information.

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

Rare Disease Story: Jeremiah

Lennox Gastaut Syndrome

Jeremiah was born healthy, except for a bit of jaundice that cleared up with bili lights after a week. He had the normal childhood illnesses and was on track with his milestones. At age 2 1/2, he was finally big enough to move from a crib to a toddler bed. On Sunday, August 24 2008, my then 15 year old son went to put Jeremiah to bed. He was laying down with him, trying to get him to sleep when he said that Jeremiah dropped his bottle so he picked it up. It was then that Jeremiah started shaking so he thought that Jeremiah was cold and he pulled the blanket up. But Jeremiah wouldnt stop shaking and he started making noises. He turned the light on and noticed that Jeremiah was having a seizure. Alex came running into my room and said: "Jeremiah is having a seizure!" I said,  "How do you know its a seizure?" and told my husband I would go check on him to find out what was going on. I saw Jeremiah in a full blown tonic/clonic seizure. I yelled for my husband and, after he came running in, I called 911. That was Jeremiah's first of MANY seizures to come. 

3 weeks later, on a Sunday night, he had another seizure at bedtime. At that point, we took him to a neurologist at Primary Children's Medical Center. They got him in for an EEG and when we got home, he had his first day time seizure. He was standing up in the dining room about to get lunch, dropped to the floor and had a seizure. 

After 3 months of sporadic seizures, they admitted him to the hospital for an over night eeg. It was early December. They had enough information after an hour but decided to keep him hooked up and finish the 24 hour eeg. We found out that he was even seizing while carrying on a conversation with the doctor! After that EEG, Jeremiah was diagnosed with Lennox Gastaut Syndrome. 

Jeremiah then took a turn for the worst: he was in the hospital in Status Epilepticus every month for a week or more, sometimes twice a month, for an entire year. 

In February of 2009 he was started on IVIg. In March 2009 he had the VNS placed. We were to the point that he was on 6 oral meds plus IVIg. He was like a zombie. He stopped talking, went back in diapers and 100% bottle fed. While in Status, he was having over 300 seizures per day, and over 100 when not in Status. My parents started the plot search and the doctors didn't think he was going to live. The prognosis was not good. No one ever thought he would get potty trained, talk or even learn. We were told to expect him to be a toddler his whole life. He stopped growing and putting on weight. 

Today, Jeremiah is a healthy 7 year old. He is in first grade and doing well! He goes in every 2 weeks for his IVIg infusion and is on 2 oral meds. He is also taking an experimental medication. He was potty trained 2 weeks before kindergarten and off the bottle in January 2012. He is talking and learning, but in a functional skills class due to his being behind. He is a 2 year old mentally. He talks like a 2 year old, and it is hard to understand him at times. But, he defied the odds and he is thriving! He is down to about 20-30 seizures per month. We see the light at the end of the tunnel now, where a few years ago, we didn't. 

LGS no longer defines who Jeremiah is.

Rare Disease Story: Sophia

Angelman Syndrome

This little love is eight-year-old Sophia. She loves animals, playing in water and making new friends and she has Angelman Syndrome. Angleman Syndrome (AS) is a neuro-genetic disorder that occurs in one in 15,000 live births and is characterized by developmental delays including difficulty speaking, seizure disorders, and symptoms of autism, cerebral palsy and even more. However, individuals with Angelman Syndrome are often full of smiles and laughter, leading to the term: “Happy Puppet” and Sophia is no exception. Please support and celebrate Sophia and all those who are affected by rare diseases this Thursday, February 28, for Rare Disease Day. For more information on Angelman Syndrome, please visit www.angelman.org.