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 at www.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
Press Contact: Jennifer Hardy-May, Hope 4 Children With Epilepsy
Phone: 801-400-0046
