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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 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:        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