Epilepsy Association of Utah

Epilepsy Foundation of America

Letter of Clarification Regarding Non-Merger with the Epilepsy Foundation of America

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.

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