Tuesday, August 26, 2014

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among other conditions (http://hope4childrenwithepilepsy.com/research-links/), the claim of “no medical use” is no longer valid; therefore, cannabis should be rescheduled.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.


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.

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

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