Epilepsy Association of Utah

Author: Annette

Official Statement on Utah Bill HB75

EAU_Logo_512pxH4CWE_LogoUtah_Kids_Foundation_Logo

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

######

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.”

#####

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

EAU_Logo_512px

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