Epilepsy Association of Utah

Epilepsy Association of Utah

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

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

 

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

Epilepsy Association Lagoon Day!

 

FOR IMMEDIATE RELEASE
It’s What Fun Is!
Lagoon
Day for the Epilepsy Association of Utah
SALT
LAKE CITY, Utah May 15, 2013 – Keep your arms and legs inside the ride at all
times, hang on tight, and have fun!
If
you haven’t heard that phrase since you were a kid, maybe it’s time to get you
back to Lagoon!
On
Tuesday, June 11th, 2013 Lagoon Amusement Park in Farmington is
recognizing the people of Utah touched by epilepsy and offering us a special
“Lagoon Day”.  From 10am to 10pm, anyone
that comes to the ticket booth and says: I am with the Epilepsy Association of
Utah will get their all day Passport for $28.00! Taxes Included.  That’s a savings of $18.00 a Passport!
But
wait, there’s more: One person who accompanies someone with epilepsy and is
designated their ‘chaperone’ will receive their Passport for $10.68! There is
one catch: chaperone’s need to be designated by this Friday, May 17th,
to ensure they get this deal. Send your chaperon’s name to Jenn@epilepsyut.org to ensure we get the
proper headcount.
The
EAU will also have the Big Horn Terrace for the day and there will be extra
personnel and EMT’s on hand to assist with any extra medical needs that may
arise.
So
get the platforms out because you must be at least this tall to ride! Hope to see you there!
Date:       Tuesday
June 11th, 2013
Time:       10:00am-
10:00pm
Place:      Lagoon
Amusement Park
                  375
Lagoon Drive
Farmington, Utah
84025
                  (80)
451-8100
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

Dr. Charlotte Dravet to Visit Salt Lake City

FOR IMMEDIATE RELEASE

DR. DRAVET TO VISIT SALT LAKE CITY: REACHING OUT TO THOSE AFFECTED BY EPILEPSY

Salt Lake City, UT June 21, 2012 – At the invitation of the Epilepsy Association of Utah, world renowned French Epileptologist, Dr. Charlotte Dravet, will visit Salt Lake City on August 15-18, 2012. Dr. Dravet has agreed to meet patients affected by Dravet Syndrome, a rare form of Epilepsy named after her research efforts. Patients are invited to meet one on one with the doctor on Monday, August 13. Dr. Dravet will also be presenting an “Introduction to Dravet Syndrome” on August 14 from 9 – 11am for all medical professionals wanting to attend. Please RSVP to this event by visiting www.epilepsyut.org/dravet_registration.html.

“The opportunity presented to the people and medical community within Utah is unparalleled”, said Kris Hansen, President of The Epilepsy Association, “Never before has the Epilepsy Community in Utah had the occasion to meet someone of her caliber. We are honored that she agreed to spend so much time here. It’s a once in a lifetime chance”.

Schedule of Meetings/Events

Monday, August 13:
9:00am – 4:00pm     Patient Visits at University of Utah

Tuesday, August 14:

12:00pm                  Lunch – By Invitation Only
2:00pm                    University of Utah Research Lab Tour
7:00pm                    Dinner with Dr. Dravet – A minimum donation of $75.00 a plate is suggested

Wednesday, August 15:
10:00am                   Lecture at University of Utah – MD only

If you would like to participate in any of these events or have any questions, please contact:

Jenn Whiting
jenn@epilepsyut.org
or
Kris Hansen
kris@epilepsyut.org

(801) 566-5949

ABOUT DR. DRAVET

Dr. Charlotte Dravet was mentored by Dr. Henri Gastaut (Lennox-Gestaut Syndrome) at the Centre St. Paul in Marseilles. Her interests were focused towards the explanationof syndromes in childhood Epilepsy, the psychological consequences of Epilepsy, the progressive Myoclonus Epilepsies and their genetics, the congenital malformations of the offspring of Epileptic women and related studies. Her main contribution was in Myoclonia Epilepsy; with emphasis on benign and severe Myoclonic Epilepsies in infancy. Dravet Syndrome, is now recognized as one of the most malignant syndromes at this age and is widely studied by other authors and clinicians as well as geneticists.

According to Davet.org, “Dr. Charlotte Dravet first described Dravet syndrome in 1978 as Severe Myoclonic Epilepsy of Infancy (SMEI). The first seizures usually happen before one year of age, with no known cause other than fever or illness. Seizures progress to be frequent and do not respond well to treatment. They also tend to be prolonged, lasting more than 5 minutes. Other types of seizures, which are common in Dravet Syndrome, appear in early childhood, including myoclonic seizures, atypical absence, complex partial seizures and nocturnal seizures. Estimates of the prevalence of this rare disorder range from 1:20,000 to 1:40,000 births.”

Dr. Charlotte Dravet has been President of the French League Against Epilepsy and a member of the Commission on Classification of Epilepsies of the ILAE. She has participated in numerous congresses, lectures and is the author of a number of published works. Now retired, she continues to work in France and Italy to improve the care of people with Epilepsy.

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://www.epilepsyut.org for additional information.

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