Epilepsy Association of Utah

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Epilepsy Association of Utah Announces New Executive Officers and Board Members

 

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FOR IMMEDIATE RELEASE: Epilepsy Association of Utah Announces New Executive Officers and Board Members
SALT LAKE CITY, Friday, July 1, 2016

The Epilepsy Association of Utah is proud to announce four new Executive Officers and four new board members effective July 1, 2016.

The EAU welcomes Tyson Dewsnup as Chairman of the Board, a new position added this year. Tyson has served the EAU as AVP of Programs since February 2015. Tyson and his wife Ariana live in Eagle Mountain, Utah with their daughter Alexandra. Tyson is an IT Business Systems Analyst at Intermountain Healthcare. He has a Bachelor’s degree in HR Management and a MBA in Information Technology Management. He is currently working on his MHA and hoping to go to law school and earn his JD in Employment Law.

The EAU welcomes Candi Huff as President. Candi has served as AVP of Marketing for the EAU since July 2014. Candi and her husband Jason live in Draper, Utah with their daughter Madison and son Austin. Candi is a 23 year veteran of the mortgage lending industry and works as a Mortgage Loan Underwriter for Bay Equity, LLC from her home based office. Candi’s professional experience also includes outside sales, marketing, training and she is a

The EAU welcomes Doug Rice as Vice-President. Doug has been a member of the EAU board for close to one year, assisting the EAU’s Political Advocacy Committee in successful lobbying efforts to pass SB232, Rescue Medication in School. Doug and his wife, Julie, live in West Jordan with their daughter Ashley. Doug retires this week as Fire

The EAU welcomes Josh Hamilton as Secretary. Josh is a new face to the EAU board and we look forward to getting to know him. Josh and his wife Mylie live in South Jordan. Josh is an Operations Supervisor at Security Service Federal Credit union and brings a wealth of knowledge to the board.

“Our new board structure and Executive Team brings to Utah powerful leadership designed to take the EAU to the next level. After four plus years of incredible growth under the leadership of Past President Annette Maughan, the Epilepsy Association of Utah is a powerful force nationally in the epilepsy community and special needs circles. We intend to ride that momentum to further our goals of Education, Outreach and Awareness!” said Candi Huff, new

Four new board members round out the new structure at the EAU and include Rita Branch-Davis, Brooke Diamond, Dawn Voss and Paul Hill. The Epilepsy Association of Utah is thrilled with the new additions to our team and looks forward to a successful term for all.

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: Candi Huff
Email: candi@epilepsyut.org
Website: www.epilepsyut.org

Official Statement on Utah Bill HB75

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FOR IMMEDIATE RELEASE: Student Advocacy Groups Oppose Utah Bill HB75
SALT LAKE CITY January 16, 2016

Epilepsy Association of Utah, Hope 4 Children with Epilepsy and Utah Kids Foundation jointly announce our opposition to HB75 Epilepsy Training in Public Schools with its current language.

While we support the effort to address the critical issue of rescue medication in Utah schools, HB75 falls short in many areas. The bill does not truly address the ignoring of the doctor-guided and federally-mandated 504 Health Care Plan, which ensures the ADA student’s right to an education in the least restrictive environment. Throughout the collaborative Individualized Education Plan (IEP) process, the 504 Health Care Plan is put in place with input from qualified school personnel, medical professionals and the student’s guardian.

HB75 would institute the Intranasal Midazolam Authorization Form. We believe this document may be considered contrary to the Federal Individuals with Disabilities Education Act (IDEA), as the Health Care Plan on record would effectively be ignored.

Only ONE rescue medication is included in HB75: Intranasal Midazolam. This medication is prescribed for about 49% of students with epilepsy, leaving the remaining 51% of the student population with seizures no recourse to receive their emergency medication. We believe this would be a discriminatory practice in that some children with epilepsy would be supplied emergency support and others would not.

We also believe this bill perpetuates the stigma that epilepsy rescue medications are unsafe, when in fact caregivers with little to no medical training routinely administer them. HB75 lowers the standard of care for students with epilepsy by neglecting the needs of the ADA student, and compromising their safety, while trivializing their right to an education.

Although HB75 DOES allow for the delegation of medication to trained personnel, which we applaud, the practical application falls short by limiting input from the parent or physician. As has been experienced with the 2006 S.B. 8 Care of Students with Diabetes in School, staffs routinely fail to implement the law, forcing students with diabetes into homeschool situations and emergency room visits.

HB75 goes against the very core of morality and common sense in servicing the student in an emergency situation.

Signed
Epilepsy Association Of Utah
Board of Directors

Hope 4 Children with Epilepsy
Co-Founders

Utah Kids Foundation
Board of Directors

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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. 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.

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 over-all health, ability to function, and quality of life. These children also have 10 times increased risk for sudden death. We actively advocate for the medical needs of children and adults with epilepsy. Visit http://hope4childrenwithepilepsy.com.

ABOUT UTAH KIDS FOUNDATION
Utah Kids Foundation’s mission is to support all special needs families in Utah by sharing information about doctors and resources in our community, facilitate the legal exchange of spare supplies, and to provide comfort and support when our children are inpatient. Currently serving nearly 2,000 families, we are now adding advocacy and providing inclusion in community events. Visit http://utahkidsfoundation.com/ for more information.

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!