Epilepsy Association of Utah

Month: March 2015

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

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

 

HB424 Endorsed by Epilepsy groups
















EAU & H4CE Announce
Support of HB424 “Epilepsy Training in Public Schools”
SALT LAKE CITY, Utah – Thursday,
March 5, 2015
The
Epilepsy Association of Utah and Hope 4 Children With Epilepsy announce their
support of HB424 “Epilepsy Training in Public Schools”, a bill introduced last
week by Rep. Doug Sagers. The bill requires that school districts allow the administration of
epilepsy rescue medications to students, as prescribed by a physician, and
provide training to volunteer “first responders” who are willing to administer
the medication as needed.
A
family in Rep. Doug Sager’s district brought this issue to him, as they are
concerned with their school’s seizure response protocol for their child. Because
each school district establishes their unique guidelines for seizure response, some
districts elect not to allow the administration of rescue medications, instead
requiring that school personnel call 911 and wait for emergency responders to
arrive and treat the seizure or transport the student to a hospital for
treatment. This process results in varying and unpredictable lengths of time
between seizure start time and treatment. Students suffer through their seizures
until emergency personnel begin treatment that could be initiated promptly and
safely by volunteers at the scene.
HB424
does not require school personnel to administer rescue medication. It directs
schools to allow volunteers to treat seizures, as outlined by a physician, and
requires that school nurses arrange for the training of such volunteers. The
bill also protects district nurses, school personnel, and volunteers from
liability for such treatment.
“This
bill addresses a critical gap in emergency care management for students with
epilepsy and related seizure disorders”, says Holly Ferrin, executive director
of the Epilepsy Association of Utah. “Additionally, this bill empowers and
supports school personnel in rendering potentially life-saving assistance. The
EAU is thankful for the gracious work Representative Sagers is putting forth,
and we fully support HB424.” 
HB424 is listed on the agenda for Health and Human
Services Committee today at 4:10pm.
#####
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, medical and transportation assistance programs, 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