Saturday, September 13, 2014

Just Dance!

Can't make the ball but don't want to miss the fun?  Join us for the After Party and JUST DANCE!  Register now!  http://epilepsyut.org/CSA_Registration.html





Friday, September 12, 2014

RSVP Now!

You don't want to miss this!  Click here to RSVP today!
 


Sunday, August 31, 2014

Seize: The Story - Taylor Ferguson

Monday, September 1, 2014
 
Seize:  The Story - Taylor Ferguson
 
 
Nobody knew I was having seizures, not even my parents. I just thought I was having blackouts as I would call them, until I went to my guitar lesson and had one of my "blackouts".  My guitar teacher worked with epileptics so she knew I had just had a seizure.  I remember peeking around the corner and wondering why my guitar teacher was at my house, what they were talking about and why my mom was crying?  We then took a visit to a doctor’s office...it was true, I had epilepsy, but at the age of nine I had never heard of epilepsy before, so I just thought it was like the flu and would go away.  The day I realized it wouldn't go away I cried myself to sleep.

School was hard!  I lost almost all of my friends because they thought I was "contagious" and when I explained to (my at the time best friend) that I wasn't she just said "okay" and walked away.  See if you were friends with me you couldn't be popular.  It took me awhile to really realize what happened with my best friend; at the time everything was crashing in on me.  I got made fun of all the time; it was so bad my mom put me in home hospital.  When I was having a lot of seizures I would be home with a tutor but when they would get under control I would go back to normal school.  I then went to a charter school in eighth grade just so I could get away from all the kids that knew about my epilepsy and would make fun of me.  When I was sixteen I had brain surgery and had a piece of the brain removed to try and stop my seizures, so I was out of school my sophomore year. I then went back to school my junior year of high school.  But with only the people from my elementary knowing me, well you would think high school kids would be more mature, no some of them still made their stabs at me I was just not as affected by it and knew how to stand up for myself.

About two years after my brain surgery I was going to get my driver’s license, the day before I was going to take the driver’s test I had another seizure.    My parent’s and I started looking into other options. We then decided to have a VNS (Vagus Nerve Stimulator) implanted.  We decided to have the VNS surgery (which is a device like a pace maker that is hooked to the vagus nerve and sends shock waves through my brain every 3 minutes for 30 seconds to try to stop or lessen the severity of my seizures or after affects), about six months to a year later the VNS stopped working and I gave up all hope.  Nothing had worked and there was nothing left to do; pills didn't work and there was no surgery left.

I never thought that I would get married because of my epilepsy but when I was twenty one I found the greatest guy in the world, who loved me for me and didn't care that I had epilepsy like a lot of the other guys out there.  So he proposed and I said "yes" and we were married about six months later. A little while later I got pregnant and I had an ectopic pregnancy (where the baby is growing in the Fallopian tube), but two years later I got pregnant again and had a daughter in May 2014.

Granted I have been talking about my epilepsy, so it hasn't been the best of memories. My life hasn't been all bad.  I have an amazing family, daughter, husband, and friends, have had awesome vacations to Bear Lake, Pinedale, Disney World/Florida, Disney Land, Island Park and many more.  I have had a great life with many bad experiences but I wouldn't take them back for anything because they have made me who I am today. 

I hope this helps someone out there in some way!

Taylor A. Zobell Ferguson


Tuesday, August 26, 2014

Epilepsy Association of Utah & Hope 4 Children With Epilepsy - Federal Call to Action



For Immediate Release 
Epilepsy Association of Utah & Hope 4 Children With Epilepsy
Federal Call to Action

SALT LAKE CITY, Utah – Tuesday, August 26, 2014

One year ago today, the Epilepsy Association of Utah became the first epilepsy organization in the United States to take a stance in support of expanding treatment options to include high-CBD/low-THC cannabis extracts. Since that time, dozens of organizations have followed suit, leading to the passage of HB105 “Charlee’s Law” in Utah and similar bills across the nation.

The Epilepsy Association of Utah and Hope 4 Children with Epilepsy have withheld public support of federal legislation until today. We have now chosen to openly support federal bill H.R. 5226: Charlotte’s Web Medical Hemp Act of 2014, sponsored by Rep. Scott Perry (R - PA), and will work toward its passage. The bill proposes to exclude industrial hemp and cannabidiol (CBD) from the definition of marijuana, granting those suffering with epilepsy access to the treatment according to the laws of their own states. Industrial hemp is defined as cannabis with THC content below .3%.

“A federal change in policy regarding cannabis is essential,’ said Annette Maughan, President and CEO of the Epilepsy Association of Utah, “My son can be treated with cannabis openly in Utah, but he can’t go to Disneyland with his family? All because his oil is grown in the United States? The incongruity of that is staggering.”

We welcome the addition of other federal bills regarding the rescheduling of cannabis and reserve the right to evaluate each on the merits of its potential impact. The federal stance that cannabis holds no medicinal value places it on Schedule 1 of the DEA’s list of controlled substances:

“Schedule I drugs, substances, or chemicals are defined as drugs with no currently accepted medical use and a high potential for abuse. “

With the published reports of success in treating epilepsy, among other conditions (http://hope4childrenwithepilepsy.com/research-links/), the claim of “no medical use” is no longer valid; therefore, cannabis should be rescheduled. Because cannabis is currently listed on Schedule 1, research and compassionate use are very difficult to accomplish, even with the involvement of medical specialists and research institutions. This needs to change.

We call upon all federal legislators to join us in this very critical and urgent cause by supporting and/or co-sponsoring H.R. 5226: Charlotte’s Web Medical Hemp Act of 2014. Likewise, we urge our state legislators, as well as all citizens of Utah and the United States, to let their voices be heard in support of those suffering with intractable epilepsy in our country.

The language for H.R. 5226: Charlotte’s Web Medical Hemp Act of 2014 can be found at https://www.govtrack.us/congress/bills/113/hr5226/text.

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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. One in 26 people will develop epilepsy at some time in their lives, leading to over 100,000 people with epilepsy in Utah alone. Epilepsy is the fourth most common neurological disorder in the US, after migraine, stroke, and Alzheimer’s disease. 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.

ABOUT HOPE 4 CHILDREN WITH EPILEPSY
We are parents of children with severe forms of epilepsy. The seizures take a toll on our children’s overall health, ability to function, and quality of life, leaving them with increased risk for sudden death. We desperately need new treatment options. We lobby to make high-CBD/low-THC cannabis extract available in Utah, and across the United States, to those who suffer with intractable epilepsy. The extract is not smoked and does not cause a “high”, but it can save the lives of children.

Press Contact: Jennifer May
Phone:                    801-400-0046
Email:                      jennifer.h.may@gmail.com
Website:               www.epilepsyut.org
Website:               www.hope4childrenwithepilepsy.com


Monday, June 9, 2014

Seize: The Story - Jenny Rebecca Lester

My name is Jenny and I am turning 4 this month!  I love to dance and play school with my Aunt.

My mom noticed that I would stare off into space and would fall down for no reason.  She made an appointment with my pediatrician.  My doctor thought it sounded like I was having seizures so he referred me to a neurologist.  The neurologist ordered an EEG nothing wrong.  He decided we needed to have an MRI of my brain.  We found a sore on my brain that I have had since I was born.  I started taking Keppra and my seizures went away for 7 months.  We increased my medicine and I have been fine the past 5 months.  I have become very hyper and keep my parents and grandparents very busy!  My doctor is very proud of how well I balance.  I already know my colors, abc’s and some of my numbers.

Monday, May 19, 2014

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.

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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. 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