Epilepsy Association of Utah

Blog

Seize: The Story – Jessie Christensen

Jessica was born a beautiful child and developed normally and hit all milestones just like she should until she had her first seizure at 9 months old. Her second and third followed, and in the first year she had 8 seizures. We started her on medication as advised by the doctors, but the seizures continued. Each year the seizures increased in number and severity as well as developing differing types of seizures. By the age of 3 Jessica was no longer developing normally, but starting to decline in her cognitive abilities and the drugs she was on were making the seizures worse not better. She was having long status seizures and then being paralyzed after for hours or days. We took her to the Institutes for the Achievement of Human Potential in Philadelphia to try to reverse the brain damage and get a handle on her seizures. There we learned about cross-lateral patterning, and masking. The patterning helped with her coordination and the masking helped to keep the seizures shorter. but they continued.

At age 5 we took her to UCLA to see if she would be a surgical candidate, but were told the seizures were not localized to one place in the brain. She was on 6 seizure drugs at this time. The doctor’s didn’t know what to tell us as they couldn’t diagnose her with anything other than idiopathic/intractable Epilepsy. Basically that means we don’t know and can’t control it, so sorry. We tried many other non-traditional therapies, some of which helped a little, but most which didn’t help at all. She was eventually diagnosed at 7 1/2 years old with Dravet Syndrome. By this time she was having over 1200 seizures per year, sometimes as many as 30 per day. We travelled to Chicago to see the foremost specialist on Dravet Syndrome, Dr. Laux, and get advice as to what we should do for Jessie. She advised us as to the medications that seem to work the best and we worked to get Jessie on those three or four medications. Jessie has been on 17 anti-epileptic medications and the Ketogenic diet as well as many vitamins and supplements suggested by her doctors. She is now 14 still having daily seizures, although not as many, and functions at a 3 year old level.

Jessie loves to color and paint, do puzzles and matching games, bake cookies and brownies play at the park and watch videos. She loves her brother Matthew and her Grandpa. She has two golden retrievers named Shadow and Pillar and she loves to be with them as much as possible. They are very patient and gentle and allow her to lay all over them. Jessie loves her friends from school and always wants to go play at their houses. She is a pro at the iPad and can learn things on it we haven’t been able to teach her through traditional methods at school. We love having her in our family.

Seize: The Story – Hanna Maria

My 9 year old girl miss Hanna Maria was born normal. Then when we went in for her first set of immunizations shots and within 12 hours after getting them, she started having seizures. These started out just in the face but by the next night they were full body seizures (Tonic/Clonic). 

Our local ER, that we went to that night, told us: ‘they are face twitches, everyone has these’. 

I said: “What? I have never seen anyone with those.”

The next day, she was not any better so I took her to her regular Doctor and he told me same thing, adding what a seizure really would look like (full body). And sure enough, that night, she had the first full body seizure. 

By the time we made it to see the Doc that specializes in this kind of stuff (at Primary Children’s Hospital) they said: yes, these are seizures and they are called ‘face seizures’. 

At age 6 months, we were having 80 to 90 seizures a day. From age 1, they said she was Developmentally Delayed and by age 3 they said she had CP.  At 3 1/2, we found out she also had Scoliosis. She had 2 rods put in her back at age 5. By 6, she got a Vagus Nerve Stimulator, to help with the seizures.  With the VNS and 5 meds, we now have only 8 to 15 a day. 

We where G-tube fed for awhile, and also had a GJ tube, but in the last year she can not do any kind of feeds, so we are on TPN through a central line. 

No matter what life has thrown her way, she is a strong little girl and I would not change my life for anything. I love her so much for she is my whole world.

Press Release: Association seeks CFO/Treasurer

FOR IMMEDIATE RELEASE
Association
seeks CFO/Treasurer
West
Jordan, Utah- March 28, 2014 – The Epilepsy Association of Utah, a 501(c)(3) charity, is
seeking a Treasurer to oversee the day-to-day financial operations of our
organization.
Qualified candidates will have a finance degree and/or a min
4 years proven track record of NPO financial oversight. The ideal candidate must
provide monthly reconciliation to the Board and oversee all aspects of the
financial health of the Association with no compensation. This position will
report directly to a Board of Directors and will also assist in creating and maintaining
the strategic vision of the organization.
Send resume and cover letter, including references to: Holly
at holly@epilepsyut.org.
Job
Description

Position:  CFO/Treasurer
Reports to:  Board of Directors
Purpose:  To manage and support
the EAU’s finances.
Salary:
None
The Board Treasurer is first, and foremost, a member
of the Executive Board of the Epilepsy Association of Utah complete with voting
privileges.  This is a volunteer position has a term of
4 years.
The Treasurer will oversee the financial health of
the Association and present a monthly statement of finances to the Board of
Directors.
Treasurer Responsibilities:
  • Serve as
    Chair of the Finance and Audit Committee
  • Authorized
    second signer on all checks
  • Create and
    maintain policies related to the budget, audit, investment, financial controls
    and fiscal management philosophies
  • Lead the
    Finance and Audit Committee in a review of any contracts for which the value is
    greater than $5,000; the contract spans multiple years and has a value of more
    than $5,000 per year; the contract has financial implications of more than
    $5,000 and was not included in the annual budget
  • Oversee, in
    consultation with staff, the budget development and monitoring process
  • Prepare
    reports for the meetings of the Board of Directors on the status of the current
    budget, investments and any financial issues requiring Board review and/or
    approval
  • Fulfill
    other duties as assigned by the CEO/President or Board of Directors.
General Responsibilities:
  • Participate
    in the development and annual monitoring of the EAU’s strategic plan;
  • Exercise
    fiduciary responsibility for the fiscal health of the organization;
  • Represent the
    best interests of the organization on all issues raised in Board meetings,
    based on careful analysis of agendas and supporting material;
  • Know and
    uphold the regulations, policies, and procedures of the organization;
  • Represent the
    EAU’s positions to individuals and groups with whom the Board member interacts
    (e.g. open doors to potential donors, make visits, or identify key alliance
    partners;)
  • Adhere to
    conflict of interest policy of the EAU;
  • Agree to the
    terms established in the Board of Directors Contract;
  • Recruit new
    members for the organization. 

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 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:        Jennifer
May
Email:                    info@epilepsyut.org
Website:                 www.epilepsyut.org

Seize: The Story – Charlee Nelson

Seize: The Story – Charlee Nelson

What an amazing year the Epilepsy Association of Utah has had! With Paint the State Purple 2014, we are relaunching our Seize: the Story series.

We have decided that it was only appropriate to start with a somber story; a story of one of our heroes, Charlee.

Charlee was born January 30, 2008 to Jeff and Catrina Nelson. She was a happy, fun loving, funny, sweet and smart 3 1/2 year old girl. She enjoyed singing, dancing, playing with her brother and sister and loved anyone to read her a hundred books a day. Little did they know the greatest trial of their lives would start on May 20, 2011, when she had her first seizure.

Following that, she had hundreds of tests including: EEG, 2 CT Scans, 3 MRI’s, Spinal tap, skin biopsy, ERG and countless blood tests to find her diagnosis. She had to endure so much pain and suffering but amazed everyone with her strength.

After 21 months of testing and searching for answers, the diagnosis came. Although it is NOT the results they had hoped for, we knew she had a greater mission on the other side. She had a genetic disease called Batten disease. It occurs when a child inherits two copies of the defective gene, one from each parent. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually children with this disease become blind and bed ridden. They will be unable to walk and talk and the disease is always fatal. Charlee’s type of NCL is Late INfantile NCL/CLN2; it begins between the ages of 2 & 4. This form progresses rapidly and ends in death between 8 and 12.

Charlee had the opportunity to meet many members of the Utah state legislature and be one of the faces for cannabis oil legislation in Utah. On March 14, 2014, Charlee was called home; her mission was complete. Just 4 days before she passed, HB105 was officially called Charlee’s law. It may have been to late to help Charlee, but she helped many people to see the importance of having the option to use cannabis oil as a treatment for seizures.

The Nelson family is heart broken as they venture into the next journey in their lives but Charlee will never be forgotten by the Epilepsy Association of Utah and her willingness to help future generations here in Utah.

Press Release: Utah Legalizes Cannabis for Seizure Treatment

FOR
IMMEDIATE RELEASE
Utah Legalizes Cannabis for
Seizure Treatment
Governor
Signs Bill – First of Its Kind in Nation
SALT LAKE CITY, Utah- Tuesday, 25 March – Today, many Utah
families cheered as Governor Gary Herbert held an event replicating his signing
of “Charlee’s Law” or HB105, the first bill of its kind allowing cannabis
extract (CBD) oil for treatment of uncontrolled seizures. Based on recommended
use by board certified neurologists, Utah families hope the oil will decrease
or even control their children’s seizures.
Governor Herbert signed the
bill last Thursday and it will go into effect this July. The new law allows
families of children with uncontrolled epilepsy to possess CBD oil,
manufactured from the cannabis plant, in Utah. Where 20 other states have
legalized the use of medical marijuana, this nationally unique law allows for
specific precautions, such as a low psychoactive component of .3 percent THC
(tetrahydrocannabinol). “CBD oil does not cause a ‘high’ and it has absolutely
no abuse potential, yet it could prove to improve quality of life or even save
lives for some of our children,” said Annette Maughan, Epilepsy Association of
Utah’s president.
Charlee’s Law states that families
who bring CBD oil into Utah must take their board certified neurologist’s
recommendation to the Utah Department of Health in order to obtain a permit
once per year. A law enforcement officer may check the validity of permits at
any time. Neurologists recommending the product to their patients must send
their findings to an institution of higher education to study. The law will
have a sunset provision of two years, allowing Utah lawmakers to analyze the
research.
Some Utah lawmakers had concerns that
the product is not yet FDA approved and questioned the known side effects.
Still, the House passed the bill 62-11 and it went on to win a unanimous vote
of 26-0 at the Senate, citing arguments supporting that children with intractable
epilepsy do not have time to wait the five to eight year process of FDA
approval.
“The
preliminary research that has been done would show that it has been very
optimistic that we actually increase life span and life potential by decreasing
the seizures by 50 to 100 percent,” said Representative Gage
Froerer, the bill’s sponsor. Maughan stated that the most common side effect is
that it makes children a little sleepy, which is an incredible improvement
compared to the FDA approved and organ destroying medications children
currently take.
“We are thrilled that Utah lawmakers have
researched and recognized the urgency of this matter, while showing an
incredible amount of compassion for Utah’s epileptic children,” said Maughan.
Press
Contact:        Jennifer May
Email:                        info@epilepsyut.org

Website:                  www.epilepsyut.org

Press Release: Paint The State Purple

FOR IMMEDIATE RELEASE
Utahns “Paint the State
Purple” for Epilepsy Awareness
Support
for Families with Seizure Disorders Widespread
WEST JORDAN, Utah- Wednesday, 26 March – Families and
communities across Utah will “paint the state purple” for Epilepsy Awareness
Day this Wednesday.
The Epilepsy Association of Utah
(EAU) is encouraging communities throughout the state to support those with
seizure disorders by displaying purple. “We hope to see an overwhelming amount
of purple on Facebook profiles, Twitter, Blogs, apparel, and signs to increase
awareness that one in every 26 people live with epilepsy,” said Katie Nelson,
EAU Board Member. Those who tag Epilepsy Utah on Facebook will be entered to
win a t-shirt. Utahns can also support the EAU by eating at Chili’s simply by
printing a flyer from the website: http://epilepsyut.org
and bringing it into the restaurant. A percent of proceeds benefit the EAU.

For the first time in Utah, EAU
events Wednesday will include an Epilepsy Awareness Walk. “Please come
out in your most ‘purplicious’ attire and support the 120,000 people in Utah
that are living with epilepsy and other seizure related disorders,” said
Nelson. The walk will be followed by a balloon launch and an Epilepsy
Awareness Community Art Project. The balloon launch will include attached
cards, honoring those battling epilepsy and celebrating a major win for Utah’s
epilepsy families this year in the passing of HB105, Plant Extract Amendments. Festivities
will have a suggested donation for each event and begin at 5 p.m. at Smith’s at
4080 W 9000 S, West Jordan. Concessions and “swag” will be available for
purchase.

A parent group working in tandem with
the EAU, Hope 4 Children with Epilepsy, has already garnered immense support
this year for their children with intractable epilepsy by petitioning for HB105.
Although the Bill was initially highly debated, supportive letters poured in to
local representatives. Letters came in from all over the state, both from
families with epilepsy and even many families without epilepsy, who just saw
the need for change. Utah lawmakers passed HB105, known as Charlee’s Law,
allowing families to access Alepsia as a treatment option recommended by a
board certified neurologist. It is anticipated that the Governor will sign the
bill on 25 March in honor of International Epilepsy Awareness Day, the day prior to Utah’s Paint
the State Purple for Epilepsy Awareness Day.
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.
Press
Contact:        Jennifer May
Email:                     info@epilepsyut.org

Website:                 www.epilepsyut.org

Press Release: House Joint Resolution for Epilepsy Education, Outreach and Awareness

WEST JORDAN, UTAH, Tuesday, February 18 2014 The Epilepsy Association of Utah (EAU) applauds the passing of Utah
House Joint Resolution 009 for Epilepsy Education, Outreach and Awareness. The
EAU began work on the resolution in December 2013 by meeting with Rep. Marie
Poulson (D) District 46, who sponsored the Resolution, and members of the Utah Department
of Health.
The
resolution passed both the House of Representatives (68-1-8) and the Senate
(29-0-0 and 22-0-7) sending the message that Utah is on the forefront of
epilepsy awareness and acceptance!
“The
Epilepsy Association of Utah notes great value in this resolution, as it shows
great potential and promise to benefit everyone affected by epilepsy, whether
it be an effect that is direct or indirect,” said Holly Ferrin, Executive
Director of the Epilepsy Association of Utah. “This is the first step in
bringing forth the advancement of rights for people with epilepsy.”      `
The
Association will be working with the Utah Department of Health and the Utah
Department of Human Services. As well as, collaborating with the Utah
Department of Veterans’ and Military Affairs, the Utah State Office of
Education, the Utah Labor Commission, the attorney general’s office, and others
to develop a comprehensive program that can be distributed throughout the state.
Ms.
Ferrin concluded; “Everyone should know what resources are available when faced
with, not only the diagnosis, but the oppression that is all to often
associated with it (epilepsy). People should know, they have resources to cope
with the daily struggles seizures bring; They should know there are resources
provided no matter the severity of their condition.”
The
EAU and the People of Utah with epilepsy, wish to extend their deepest
appreciation to Rep. Poulson and Senator Patricia Jones for their sponsorship
and personal support of this resolution.
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 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:        April Sintz
Email:                     april@epilepsyut.org
Website:                  www.epilepsyut.org

Press Release: Dixie Debut for Artilepsy

FOR IMMEDIATE RELEASE

Epilepsy Association of Utah’s Artilepsy displays in Utah’s Dixie
Artwork to visit Southern Utah

West Jordan, UT – January 1, 2014 – “…it is the duty of an artist to create a sense of beauty that moves us out of our internal realm to appreciate what we might not have seen before.”
– Robert Hall

The Epilepsy Association of Utah is taking Artilepsy on the road! For the first time in it’s 4-year history, the artwork created by people affected by epilepsy will leave Salt Lake and head to warmer climates.

Opening night festivities, including music and light hors d’oeuvre, begins at 5:30pm on January 17th at the Snow Canyon Clinic in Ivins. The artwork will remain on display, at the clinic, Monday – Friday through January 31st from 8:30am to 5:00pm.

Snow Canyon Clinic
272 E. Center St.
Ivins, UT.
84738

5:30pm – 7:00pm

The Association is pleased to have on display an original piece by renowned photographer, Robert Hall. The black and white piece, ‘Dahlia’ was graciously donated to the EAU in conjunction with the Artilepsy Exhibit in December. It has never been seen on display before it’s unveiling in St. George.

About the EAU
The Epilepsy Association of Utah was founded in 1973, and is the only 501(c)(3) epilepsy charity in Utah. New statistics conclude that 1 in every 26 people are affected with epilepsy at some time in their lives. The EAU is dedicated to enhancing the quality of life for all individuals living with epilepsy and seizure disorders. Epilepsy is a disorder with a variety of causes and affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. The EAU sponsors a teen camp, awareness campaigns, public education, support groups, advocacy, college scholarships, art exhibits, educational conferences and more. Visit http://epilepsyut.org for more information.

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

Seize: The Story – Addy Hyer

At the tender age of three, Addy had her first seizure.  We thought she was choking as she lay on the
floor making gurgling noises.  After the
EMT’s arrived and we explained what happened they mentioned it might have been
a seizure and we were transferred to the ER. 
The next few months would be a nightmare.  Addy manifested 4 different types of seizures
which included myoclonic, astatic, absence and tonic clonic.   Ironically we had just replaced the
carpeting in our home with hardwood floors. 
Her injuries were numerous as she repeatedly fell on those floors and
seized.  It’s hard to see your child
covered in bruises, lacerations and with permanent teeth knocked loose.  It became necessary to strap her into her
chair during meals and accompany her to the toilet or when using the
stairs.  There is no known cause for her
disorder and we were told she may outgrow it, however she continues to decline.  Her doctor has diagnosed her with a
combination of two different syndromes which are Doose and Lennox Gastaut.  They are both difficult to control and we are
constantly changing medications and treatments to try and stop her seizures.  Currently Addy is on three different
medications.  Her daytime seizures are
controlled for now but we have never had control of her nocturnal seizures.  The side effects of these medications have
caused developmental delays and learning disabilities as well as behavioral
problems.  A secondary diagnosis of
Sensory Processing Disorder has also recently popped up.  We have tried all kinds of alternative
treatment including chiropractic, homeopathic, acupressure, hypnotherapy,
occupational therapy and brain-linking. 
Our next course of action will probably be the Ketogenic diet. 
Through it all Addy constantly has
a smile on her face which is a reminder to me of how valiant her spirit
is.  She is now seven years old and in the
second grade.  She attends a tumbling and
clogging class every week and has a special connection with animals.  We are in the process of applying for a
companion/seizure dog for her.  The
hardest thing for me as her mother is to continually watch my daughter slip
away.  I will never give up hope and I
will try every thing in my power to have her be a normal kid again and come
back to me. 

Chili’s Give Back Night for Epilepsy Awareness



This Wednesday, November 6th, 2013, all Utah locations of Chili’s Grill & Bar are supporting the Epilepsy Association of Utah (EAU) through a “Give Back Night.”  So, on Wednesday, let your local Chili’s do the cooking and support the EAU at the same time!

As if their Spinich & Artichoke appetizer wasn’t enough incentive to head in to Chili’s and enjoy a meal, Chili’s is showing their support by donating to the EAU!  With each flyer (see below) presented on Wednesday, 11/06/2013, Chili’s will donate 15% of the event day sales back to the EAU.

When: Wednesday, 11/06/13
Time: 11:00 am – 11:00 pm (or during regular operating hours)
Where: At ALL Utah Chili’s locations.

Join the official Facebook event and, when you are at dinner, snap some pics and tag Epilepsy Utah in your photo so we can add your experience to our Facebook album.  Your photo might even be featured in the next Wavelength newsletter!

We look forward to seeing you at Chili’s!!!

~*~

Please print a flyer and take it in to your nearest Chili’s location in order to have 15% of the check donated in support of the Epilepsy Association of Utah.

Share this flyer on Facebook!  

~*~
If you have any questions or concerns, please email holly@epilepsyut.org or call/text (801) 566-5949.

NOTICE:  

While the flyer states that the event is only happening in Layton, UT.,  the EAU has confirmation from the event planner that this flyer does apply to ALL Chili’s Grill & Bar locations, and each location is aware that the Give Back Night is happening only on Wednesday, November 6th, 2013.  

The “Give Back” event flyer is required with each check to receive credit for the sale.  Sale cannot be included in donation amount without flyer.  

Offer is only valid on the date stated above.  Donations will not be given on sales made prior to or past this date.