Epilepsy Association of Utah

Hope 4 Children With Epilepsy

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

Epilepsy Association of Utah & Hope 4 Children With Epilepsy – Federal Call to Action

For Immediate Release 

Epilepsy Association of Utah &
Hope 4 Children With Epilepsy
Federal Call to Action
SALT LAKE CITY, Utah – Tuesday,
August 26, 2014
One year ago today, the
Epilepsy Association of Utah became the first epilepsy organization in the
United States to take a stance in support of expanding treatment options to
include high-CBD/low-THC cannabis extracts. Since that time, dozens of organizations have
followed suit, leading to the passage of HB105 “Charlee’s Law” in Utah and
similar bills across the nation.
The Epilepsy Association of Utah and Hope 4 Children with Epilepsy
have withheld public support of federal legislation until today. We have now
chosen to openly support federal bill H.R. 5226: Charlotte’s Web Medical Hemp
Act of 2014, sponsored by Rep. Scott Perry (R – PA), and will work toward its
passage. The bill proposes to exclude industrial hemp and cannabidiol (CBD)
from the definition of marijuana, granting those suffering with epilepsy access
to the treatment according to the laws of their own states. Industrial hemp is
defined as cannabis with THC content below .3%.
“A federal change in policy regarding cannabis is essential,’ said
Annette Maughan, President and CEO of the Epilepsy Association of Utah, “My son
can be treated with cannabis openly in Utah, but he can’t go to Disneyland with
his family? All because his oil is grown in the United States? The incongruity
of that is staggering.”

We welcome the addition of other federal bills regarding the rescheduling of
cannabis and reserve the right to evaluate each on the merits of its potential
impact. The federal stance that cannabis holds no medicinal value places it on
Schedule 1 of the DEA’s list of controlled substances:

“Schedule I
drugs, substances, or chemicals are defined as drugs with no currently accepted
medical use and a high potential for abuse. “

With the published reports of success in treating epilepsy, among other
conditions (http://hope4childrenwithepilepsy.com/research-links/), the claim of
“no medical use” is no longer valid; therefore, cannabis should be rescheduled.
Because cannabis is currently listed on Schedule 1, research and compassionate
use are very difficult to accomplish, even with the involvement of medical
specialists and research institutions. This needs to change.
We call upon all federal legislators to join us in this very
critical and urgent cause by supporting and/or co-sponsoring H.R. 5226:
Charlotte’s Web Medical Hemp Act of 2014. 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.
The language for H.R. 5226: Charlotte’s Web Medical Hemp Act of
2014 can be found at https://www.govtrack.us/congress/bills/113/hr5226/text.
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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 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: Jennifer May
Phone:                    801-400-0046
Email:                      jennifer.h.may@gmail.com
Website:               www.epilepsyut.org
Website:               www.hope4childrenwithepilepsy.com

New Avenues for Treatment Supported

FOR
IMMEDIATE RELEASE

New avenues for treatment supported
SALT LAKE CITY, Monday, August 26, 2013 – The
Epilepsy Association of Utah (EAU) recognizes the potent nature and reputation
cannabis has gained in recent news.  While
the EAU does not condone the abuse of marijuana or recreational use of marijuana,
we note the medical value and potential the extraction of Cannabidiol (CBD)
from the plant has for the epilepsy community. 
“This isn’t a political
issue and it isn’t an ethical issue; this is a medical and public policy
issue,” says Jennifer May, EAU Professional Advisory Board Member.  She continued, “I never imagined I’d be
advocating for high-CBD cannabis, but watching my son seize every day has
forced me to become educated and realize the potential this plant extract has
for changing lives.”
The EAU believes there is
great benefit in the support of any legislative measures allowing the expansion
of treatment options, specifically any medical grade product derived from the
cannabis plant.
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:        Annette Maughan
Email:                        annette@epilepsyut.org
Website:                  www.epilepsyut.org