Epilepsy Association of Utah

Epilepsy Awareness

EAU & H4CE Announce Federal Bill and Epilepsy Celebration

For Immediate Release: Epilepsy Association of Utah & Hope 4 Children With Epilepsy Announce Introduction of Federal “Charlotte’s Web Medical Access Act of 2015” & Celebration of “Paint the State Purple” for Epilepsy Awareness
SALT LAKE CITY, Utah – Wednesday, March 25, 2015

The Epilepsy Association of Utah and Hope 4 Children With Epilepsy have joined thousands of families across the nation advocating for federal access to therapeutic hemp oil. A non-profit organization, Coalition for Access Now, has been formed to streamline the bi-partisan legislative efforts, and representatives of the group joined lawmakers at a press event in Washington DC today at 2:00pm (EST) to introduce the “Charlotte’s Web Medical Access Act of 2015”.

The bill proposes to amend the Controlled Substances Act to exclude therapeutic hemp and cannabidiol (CBD) from the definition of marijuana, granting those suffering access to treatment according to the laws of their own states. Therapeutic hemp is defined as cannabis with THC content below 0.3%. Although HB105 “Charlee’s Law” was passed in the Utah legislature last year, the law remains in opposition to ambiguous federal legislation, meaning families are breaking federal law when treating their children with high-CBD hemp oil. They are open to prosecution by the federal government. Producers are also at risk since the oil cannot legally be shipped or transported into Utah without violating federal law. Removing non-psychotropic high-CBD hemp oil from the same category as marijuana would remove barriers and allow for increase in supply, reduction in cost, and improvement in quality and testing. It would give every family in the nation legal access to the treatment. In addition, the current restrictions on research would be lifted so researchers can be free to study the impact of the treatment on various conditions.

We plead with federal legislators to support and/or co-sponsor “Charlotte’s Web Medical Access Act of 2015”. 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.

Information regarding “Charlotte’s Web Medical Access Act of 2015” can be found at www.coalitionforaccessnow.org. Utah families participating in the federal effort invite you to join them at Thursday’s “Paint the State Purple” event on the steps of our state capitol building in celebration of International Epilepsy Awareness Day!

“Paint the State Purple” will be happening at the capitol on Thursday evening, 6:30-8:30. The event will include live music, bubble party, coloring for kids, information tables, and 3eQ recording sessions. 3eQ is the Epilepsy Association of Utah’s new awareness campaign inviting individuals to record themselves answering three key questions about their experience with epilepsy and then submit their videos to the EAU for posting online. Videos can be viewed atwww.epilepsyutah.blogspot.com. Board members of the Association will be at “Paint the State Purple” prepared to create these videos upon request.

In addition to the day’s events, the Epilepsy Association of Utah (EAU) is encouraging Utahns throughout the state to rally support for those with seizure disorders by wearing or displaying purple and posting their pictures on social media. Jennifer May, co-founder of Hope 4 Children With Epilepsy, is excited about the awareness and advocacy being brought to those suffering with epilepsy. “Across the country, families and individuals impacted by epilepsy are pulling together to strengthen each other, educate their communities, and make changes in law that will allow groundbreaking new therapies to move forward and improve lives.”

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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 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.

ABOUT HOPE 4 CHILDREN WITH EPILEPSY
We are parents of children with severe forms of epilepsy. Most have multiple types of seizures every day, varying in intensity and length from seconds to hours. The seizures take a toll on the children’s overall health, ability to function, and quality of life. These children also have 10-times increased risk for sudden death. We desperately need new treatment options that hold hope for controlling the seizures, stopping the deterioration, and improving quality of life for our kids. We have been lobbying to make high-CBD/low-THC cannabis extract available in Utah to those who suffer with intractable epilepsy. The extract is NOT smoked and it CANNOT get anyone ‘high’, but it CAN save the lives of our children. Visit www.hope4childrenwithepilepsy.com for additional information.

Press Contact:    Candi Huff – Epilepsy Association of Utah
Phone:                  801-557-0326
Email:                   candi@epilepsyut.org
Website:               www.epilepsyut.org

Press Contact:     Jennifer Hardy-May – Hope 4 Children With Epilepsy
Phone:                  801-400-0046
Email:                   lovingthemayhem@gmail.com
Website:               www.hope4childrenwithepilepsy.com

#3eQ

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The Epilepsy Association of Utah invites you to answer 3 Questions about Epilepsy. The #3eQ campaign is based on the three pillars of the Epilepsy Association of Utah: Education, Awareness and Outreach.

Each question was designed to engage people in supporting epilepsy awareness by helping them understand the effect it has on their life and the lives of those they know. 1 in 3 people know someone with epilepsy.

Here’s how it works:

1. Print out the graphics (Not required but can be helpful) including the questions
2. Use your camera or phone to record yourself answering the questions.
3. Email 3eQ@epilepsyut.org to get the link to upload your video.

Note: Be sure to say your name, and maybe even spell it, before you answer the questions. We will tag you in the live video on our YouTube Channel: https://www.youtube.com/c/epilepsyutorg Facebook and Twitter feeds.

Thank you!

Letter of Clarification Regarding Non-Merger with the Epilepsy Foundation of America

EAU_Logo_512px
For Immediate Release: Epilepsy Association of Utah & Hope 4 Children With Epilepsy Letter of Clarification Regarding Non-Merger with Epilepsy Foundation of America
SALT LAKE CITY, Utah – Friday, March 13, 2015
Over the past 40 years, the Epilepsy Association of Utah has served the community with programs designed to improve the quality of life for people with epilepsy and seizure disorders. Along with its strong political advocacy and outreach, the Association has maintained statewide support programs, medical assistance, transportation assistance, scholarships, Get Seizure Smart! training, summer camps, and awareness events, among other activities.  It is our continuing
commitment to her people that drives us to find innovative ways to educate Utah citizens, increase awareness about seizures, and reach out to those in need.In May of 2014, the Epilepsy Foundation of America reached out to the Association with an invitation to become the Foundation presence in Utah. In keeping with our commitment to our members to continuously consider options for growth and development, the board of directors voted in August to investigate the proposal more closely and then began working through the details of a possible merger.

The Association’s Merger Committee was tasked to work with the principals involved and present a finding to the board in March of 2015.  In discovery with the Foundation, the Merger Committee was unable to elicit assurances from the Maryland-based group that their presence here would improve the quality of life for Utahans or better serve their community; it became clear that our interests were not aligned.

Most recently, the EAU lobbied for several bills during the 2015 Legislative session.  We found that the Association’s focus on the best for the people of Utah was not mirrored in the EFA’s position regarding our legislative efforts.

The Association is not about market share. We are committed to our people, programs, services and advocacy. Our focus remains strong: enhancing the quality of life for all individuals living with epilepsy and seizure disorders. The board voted to pursue an “affiliate” status that would allow local governance, but the Foundation declined.

We are committed to you. The Association is your association. Our Board is a local board, in touch with the needs of the people, rather than operating from afar. We embrace the community, irrespective of race, religion or gender. We encourage engagement and seek to partner with businesses and legislators to improve the lives of Utahans. We invite you to join us in this endeavor.

Please visit us on Facebook, Twitter, Instagram, Google+ and epilepsyut.org

Seize hope,
Board of Directors – Epilepsy Association of Utah#####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: Candi Huff, Epilepsy Association of Utah
Phone: 801-557-0326
Email: candi@epilepsyut.org
Website: www.epilepsyut.org

Press Contact: Jennifer Hardy-May, Hope 4 Children With Epilepsy
Phone: 801-400-0046
Email: lovingthemayhem@gmail.com
Website: www.hope4childrenwithepilepsy.com

 

Seize: The Story – Terisa Sitton

I was a day old when I started having seizures. 
I was transferred to Primary Children’s and spent about 5 days there, they took
me off the medicine after I stopped having seizures and sent me home. 
I remained seizure free for a long time, until I had a seizure again at almost 9 years old and in my third grade classroom! It was Tonic Clonic. The only thing I remember is waking up in a wheel chair in the school
hallway heading to the office. My mom came and got me and we went to the hospital. Once there, they ran tests and made arrangement for me to go see a Neurologist. Over
the next two weeks I had two more seizures so they decided to put me on
medication. 
For the last 7 years I have continued to have thousands of seizures
ranging from auras, absence, partial complex and full complex seizures. I have
been going through all the testing to see if I am eligible to have brain
surgery. The fact of surgery scares me. I have talked to so many people about
it like my family; they really want me to get it to help with my seizures. All
the doctors I have talked to says it is a good idea. And my friends are very
supportive about this idea with surgery. Also my friends are very supportive
with me and my epilepsy, they have always been there for me and helped me
through so much. I love them! I am very open about my epilepsy; I tell anyone
that I’m with just so I can be safe in case I have a seizure. 

I am constantly fighting the stigma of having epilepsy and I have made it my mission to tell people about it, to help them be more comfortable with people that have seizures. Breaking that stigma is why my family is
involved with seizure training and why we are all so open to friends and
anybody who wants to know more. 

I may have
epilepsy, but epilepsy doesn’t have ME!!!

Seize: The Story – Cole Kellar

My name is Cole. I am 3 years old. I
was a healthy little boy saying mama & dada and waving, until 10 months old
when I suddenly developed “A-tonic
drop seizures”
& “Absent
Seizures”
aka “Petit-Mal”in August
2009. My world suddenly changed as I had 100’s of seizures a day. After I
started having seizures, my brain couldn’t keep up and I was diagnosed with
severe brain disorder called “Epileptic
Encephalopathy”
and started regressing
developmentally. I stopped pointing, waving & saying mama & dada. I
don’t talk anymore & get frustrated so I cry a lot. I am developmentally a
10 month old & a 20 month old motor wise, but I am really 3. I started the Ketogenic
Diet
in 2010-2011, it helped 75% of my
seizures, I was on it for 1 year…but ALL of the seizures came back in FULL
FORCE. I’ve also been diagnosed with “Intractable
Epilepsy”
meaning that my seizures are being
treated, but they aren’t stopping. I’ve been on A LOT of seizures meds, none of
them worked…they made my seizures worse. Doctors call me a
“complicated” case and don’t know how to help me. On February 22, 2011-
I flew across the county to the
Cleveland
Clinic
in Ohio & neurologist Dr.
Deepak Lachhwani
found that my
left temporal & occipital lobes are malformed

aka “Cortical
Dysplasia
“. They found a 3rd seizure type
as well, “Infantile
Spasms” aka “West Syndrome”

which are HORRIBLE seizures with a poor prognosis on development. On September
1, 2011
I had brain surgery to remove my Left
Temporal & Occipital Lobes by the BEST neurosurgeon, Dr.
William Bingaman
(who has done the MOST pediatric brain
surgery’s and has NEVER had a fatality, most hospitals have a 1 in 100 deaths
from brain surgery). I had 150+ seizures a day for 2 straight years. Since
my surgery
, my mommy & daddy haven’t seen any
“S’s”.  You can  read more about me on my blog www.beatingepilepsy.blogspot.com

Seize: The Story – Eli Daniels

Eli Daniels was born on January
23, 2012.  He was born four weeks early
at 3 pounds 10 ounces. He was taken to the NICU in Logan, Utah, where he stayed
until February 8, 2012 when he was taken to PCMC by ambulance. He stayed in
PCMC NICU until mid April when he was allowed to come home. Eli was then
diagnosed with Laryngomalacia, a cleft in the soft palate, significant hearing
loss and blindness. 

Eli has always been small but
defying doctors’ expectations. We have been told on many occasions that he is tougher
than he appears especially after his multiple surgeries and hospital visits.
After many inconclusive tests to determine what is his underlining condition
is, Eli underwent a MRI in October of 2012. The MRI showed Eli suffered a
stroke early in pregnancy.  After four
months, Eli started having spasms. These were later diagnosed as Infantile
Spasms. After trying a couple of steroid treatments, the EEG no longer showed
spasm activity. After two months the seizures came back but now it has been
determined to be another form a seizures and not infantile spasms.


 While there are no clear answers as to what is
causing all of his trials, Eli is a happy, stubborn little boy. He has defied
odds in his 16 months and continues to impress everyone he meets. While Eli may
still be small, at not quite 15 pounds, he is learning and growing. He leaves a
mark on everyone’s heart that he meets. He truly is a “small but mighty” little
boy.