Epilepsy Association of Utah

Press Release

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

Press Release: Epilepsy Association of Utah Announces “Seizure Smart” Education Conference

For Immediate Release

Epilepsy Association of Utah Announces 
“Seizure Smart” Education Conference
SALT LAKE CITY – Monday, May 19, 2014 
The Epilepsy Association of Utah (EAU) announces its annual “Get Seizure Smart!” Epilepsy Education Conference, presenting the latest in epilepsy science and treatment options, as well as tools and resources for those affected by epilepsy. The “Seizure Smart” conference will be held Saturday, June 7, 2014 from 8 a.m. to 4 p.m. at Little America Hotel, 500 South Main Street, Salt Lake City. Individuals with epilepsy, families of those affected, medical personnel, educators, and first responders, as well as the general public, are invited to attend.

Dr. Ian Miller, pediatric neurologist at Miami Children’s Hospital, international expert in treating Dravet syndrome and member of the Dravet Syndrome Foundation’s Professional Advisory Board, will be the keynote speaker and special guest. He is scheduled to discuss the discovery of genetics in epilepsy and the push for research into CBD-based treatment options.

The conference will feature breakout sessions with renowned experts presenting on topics including the complexities of epilepsy, genetics of epilepsy, latest treatment options, alternative therapies, coping and advocacy, managing behaviors and sibling behaviors, mental health, trusts and living wills and patient resources. Several organizations and vendors will be in attendance with tables providing helpful information, a few of which include the Division of Services for People with Disabilities, Hope 4 Children With Epilepsy, Utah Kids, Utah Parent Center, Autism Council of Utah and Brain Balance Centers.

With the recent passage of HB105 “Charlee’s Law” allowing for the possession of high-CBD/low-THC cannabis oil for the treatment of intractable epilepsy in adults and children, the EAU will present the specifics of the new Hemp Extract Registration Program and the safe and effective use of the therapy. Jennifer May, co-founder of Hope 4 Children With Epilepsy, the EAU’s parent advocacy group who lobbied in favor of the bill, will be walking patients through the details of the law and the processes required to gain access to approved extracts for treatment. As the leading provider of high-CBD/low-THC cannabis oil, Realm of Caring’s own Heather Jackson will present information about the oil as a treatment for intractable epilepsy. Realm of Caring is a non-profit organization in Colorado who oversees the cultivation of the Charlotte’s Web plant and its processing and distribution as Alepsia, a non-psychoactive extract infused in oil.

“Our goal with the Seizure Smart Epilepsy Conference is to provide those affected by epilepsy with the tools needed to educate themselves, as well as those around them, and obtain the best treatments possible, whether they be mainstream or alternative,” said April Sintz, EAU Conference Chairperson and H4CE leadership member. “We want to empower people by giving them choices and resources that are available to all of us here in the state of Utah,” Sintz stated.

Cost for the conference is $30 for the public ($15 for EAU members) if registered in advance; an additional $10 charge will apply for those registering at the door. A light breakfast, a catered lunch, and a “loot bag” will be provided for each attendee. Registration is open on the EAU website at http://epilepsyut.org/conference2014.html.

##### 
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, totaling 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. 

Media Contact: Jennifer Hardy May 
Email: info@epilepsyut.org 
Website: www.epilepsyut.org 

Press Release: Utah Legalizes Cannabis for Seizure Treatment

FOR
IMMEDIATE RELEASE
Utah Legalizes Cannabis for
Seizure Treatment
Governor
Signs Bill – First of Its Kind in Nation
SALT LAKE CITY, Utah- Tuesday, 25 March – Today, many Utah
families cheered as Governor Gary Herbert held an event replicating his signing
of “Charlee’s Law” or HB105, the first bill of its kind allowing cannabis
extract (CBD) oil for treatment of uncontrolled seizures. Based on recommended
use by board certified neurologists, Utah families hope the oil will decrease
or even control their children’s seizures.
Governor Herbert signed the
bill last Thursday and it will go into effect this July. The new law allows
families of children with uncontrolled epilepsy to possess CBD oil,
manufactured from the cannabis plant, in Utah. Where 20 other states have
legalized the use of medical marijuana, this nationally unique law allows for
specific precautions, such as a low psychoactive component of .3 percent THC
(tetrahydrocannabinol). “CBD oil does not cause a ‘high’ and it has absolutely
no abuse potential, yet it could prove to improve quality of life or even save
lives for some of our children,” said Annette Maughan, Epilepsy Association of
Utah’s president.
Charlee’s Law states that families
who bring CBD oil into Utah must take their board certified neurologist’s
recommendation to the Utah Department of Health in order to obtain a permit
once per year. A law enforcement officer may check the validity of permits at
any time. Neurologists recommending the product to their patients must send
their findings to an institution of higher education to study. The law will
have a sunset provision of two years, allowing Utah lawmakers to analyze the
research.
Some Utah lawmakers had concerns that
the product is not yet FDA approved and questioned the known side effects.
Still, the House passed the bill 62-11 and it went on to win a unanimous vote
of 26-0 at the Senate, citing arguments supporting that children with intractable
epilepsy do not have time to wait the five to eight year process of FDA
approval.
“The
preliminary research that has been done would show that it has been very
optimistic that we actually increase life span and life potential by decreasing
the seizures by 50 to 100 percent,” said Representative Gage
Froerer, the bill’s sponsor. Maughan stated that the most common side effect is
that it makes children a little sleepy, which is an incredible improvement
compared to the FDA approved and organ destroying medications children
currently take.
“We are thrilled that Utah lawmakers have
researched and recognized the urgency of this matter, while showing an
incredible amount of compassion for Utah’s epileptic children,” said Maughan.
Press
Contact:        Jennifer May
Email:                        info@epilepsyut.org

Website:                  www.epilepsyut.org

Press Release: House Joint Resolution for Epilepsy Education, Outreach and Awareness

WEST JORDAN, UTAH, Tuesday, February 18 2014 The Epilepsy Association of Utah (EAU) applauds the passing of Utah
House Joint Resolution 009 for Epilepsy Education, Outreach and Awareness. The
EAU began work on the resolution in December 2013 by meeting with Rep. Marie
Poulson (D) District 46, who sponsored the Resolution, and members of the Utah Department
of Health.
The
resolution passed both the House of Representatives (68-1-8) and the Senate
(29-0-0 and 22-0-7) sending the message that Utah is on the forefront of
epilepsy awareness and acceptance!
“The
Epilepsy Association of Utah notes great value in this resolution, as it shows
great potential and promise to benefit everyone affected by epilepsy, whether
it be an effect that is direct or indirect,” said Holly Ferrin, Executive
Director of the Epilepsy Association of Utah. “This is the first step in
bringing forth the advancement of rights for people with epilepsy.”      `
The
Association will be working with the Utah Department of Health and the Utah
Department of Human Services. As well as, collaborating with the Utah
Department of Veterans’ and Military Affairs, the Utah State Office of
Education, the Utah Labor Commission, the attorney general’s office, and others
to develop a comprehensive program that can be distributed throughout the state.
Ms.
Ferrin concluded; “Everyone should know what resources are available when faced
with, not only the diagnosis, but the oppression that is all to often
associated with it (epilepsy). People should know, they have resources to cope
with the daily struggles seizures bring; They should know there are resources
provided no matter the severity of their condition.”
The
EAU and the People of Utah with epilepsy, wish to extend their deepest
appreciation to Rep. Poulson and Senator Patricia Jones for their sponsorship
and personal support of this resolution.
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:        April Sintz
Email:                     april@epilepsyut.org
Website:                  www.epilepsyut.org

Press Release: Dixie Debut for Artilepsy

FOR IMMEDIATE RELEASE

Epilepsy Association of Utah’s Artilepsy displays in Utah’s Dixie
Artwork to visit Southern Utah

West Jordan, UT – January 1, 2014 – “…it is the duty of an artist to create a sense of beauty that moves us out of our internal realm to appreciate what we might not have seen before.”
– Robert Hall

The Epilepsy Association of Utah is taking Artilepsy on the road! For the first time in it’s 4-year history, the artwork created by people affected by epilepsy will leave Salt Lake and head to warmer climates.

Opening night festivities, including music and light hors d’oeuvre, begins at 5:30pm on January 17th at the Snow Canyon Clinic in Ivins. The artwork will remain on display, at the clinic, Monday – Friday through January 31st from 8:30am to 5:00pm.

Snow Canyon Clinic
272 E. Center St.
Ivins, UT.
84738

5:30pm – 7:00pm

The Association is pleased to have on display an original piece by renowned photographer, Robert Hall. The black and white piece, ‘Dahlia’ was graciously donated to the EAU in conjunction with the Artilepsy Exhibit in December. It has never been seen on display before it’s unveiling in St. George.

About the EAU
The Epilepsy Association of Utah was founded in 1973, and is the only 501(c)(3) epilepsy charity in Utah. New statistics conclude that 1 in every 26 people are affected with epilepsy at some time in their lives. The EAU is dedicated to enhancing the quality of life for all individuals living with epilepsy and seizure disorders. Epilepsy is a disorder with a variety of causes and affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. The EAU sponsors a teen camp, awareness campaigns, public education, support groups, advocacy, college scholarships, art exhibits, educational conferences and more. Visit http://epilepsyut.org for more information.

Press Contact: Lindsey Palmer
Email: lindsey@epilepsyut.org
Website: www.epilepsyut.org

Awarding Community Service

 

FOR IMMEDIATE RELEASE


Community Service has its Rewards
SALT LAKE CITY, Saturday August 24th, 2013 – The EAU’s Community Service Awards are
the annual opportunity to recognize, encourage and promote those people and
entities that make or have made an impact in the epilepsy community within
Utah.
This year marks another achievement: our 40th Anniversary! And
that’s something to party about!

“We are so excited to celebrate how far
the EAU has come since its inception,” says Holly Ferrin, Executive
Director.  “It’s gratifying to
recognize those who have helped our organization enhance the quality of life
for all individuals living with epilepsy and seizure disorders.  This will excite and revitalize the
energies put forth with volunteer efforts for future endeavors with the
Epilepsy Association of Utah.”  

So brush up on your ‘Crocodile Rock’ and wear your best 1973
leisure suit because we are going retro! Anyone for some Fondue?
September 20th, 2013 
Infinity Event Center
26 E 600 S 
Salt Lake City, UT. 84111
6:00pm – 7:00pm Cocktail hour
7:00pm – 10:00pm Dinner and Awards

  

Nominations will close September 3rd, at which time voting will
commence. Nominees will be notified prior to then beginning of voting. Voting
will be open until September 10th and awards will be handed out during the
Dinner on September 20th.

Categories

Medical Professional
Volunteer Group
Volunteer
Youth Volunteer
Advocate
Youth Advocate
Commercial Partner

Registration to attend the celebration of our 40th year and Community Service Awards is now open!  
The registration types are as follows:
EAU Member: $30.00 
Non Member: $40.00
8-Person Table: $325.00
Corporate (up to 16): $600.00

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:                   Lindsey
Palmer
Email:                                lindsey@epilepsyut.org
Website:                            www.epilepsyut.org

EAU has been pinned!

FOR IMMEDIATE RELEASE

EAU Pinterest-ed!

SALT LAKE CITY, Utah, March 4, 2013 – The Epilepsy Association of Utah is expanding their Social Media presence even further by joining Pinterest as Epilepsy Utah.

“Pinterest has become a vehicle through which we share our common ideas and goals,” said Holly Ferrin, AVP of Programs and Services. “ With that knowledge, we are better able to share the facts about epilepsy as well awareness for epilepsy in an engaging and graphically pleasing manner. Pinterest is the perfect tool to share creative ideas about living with and educating oneself about epilepsy without the traditional intimidation of such a harsh condition”.

The EAU can be followed at: http://pinterest.com/epilepsyut73/

ABOUT PINTEREST

Pinterest is a tool for discovering things you love, and doing those things in real life. Ben Silbermann, Evan Sharp and Paul Sciarra co-founded our site in March 2010. Since then, we’ve helped millions of people pick up new hobbies, find their style and plan life’s important projects.

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 150,000 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: Lindsey Palmer
Email: lindsey@epilepsyut.org
Website: www.epilepsyut.org

EAU now on Meetup!

FOR IMMEDIATE RELEASE
Find the EAU on Meetup.com
SALT LAKE CITY, Utah, February 24, 2013 – In an ever-diligent effort to reach out and engage
the community in an open discussion of epilepsy and its effect on the day-to-day
life of people living with the condition, The Epilepsy Association of Utah is now utilizing Meetup.com.
“The demographic of Meetup users is
largely Young Adult. An age group that we have been most anxious to engage in
helping”, said Annette Maughan, President of the Epilepsy Association of Utah.
“We have several young adults on the Board at the EAU and they have expressed
their concerns about this largely overlooked group. I can only imagine how
difficult it must be to have epilepsy AND be a teenager or college student. It
may seem overwhelming at times. Because of this, we have created a Support
Group and are reaching out wherever we can to get young adults more engaged in
open discussion”.
The EAU began posting meetups on
Meetup.com on February 12th 2013 with the hopes of reaching even more people. Currently
we utilize Meetup to list support groups and upcoming events. To receive
notifications from Meetup, go to www.meetup.com and search “Epilepsy Association” or copy and
paste this link into your browser: http://www.meetup.com/EAUMeetup/.
Login is required but made easier by logging in using the users Facebook
account.
Hope to see you at our upcoming events!
ABOUT MEETUP.COM
Meetup is the world’s largest network of local groups. Meetup
makes it easy for anyone to organize a local group or find one of the thousands
already meeting up face-to-face. More than 9,000 groups get together in local
communities each day, each one with the goal of improving themselves or their
communities.
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 150,000 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:        Lindsey
Palmer
Email:                    lindsey@epilepsyut.org
Website:                 www.epilepsyut.org