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.
Board of Directors – Epilepsy Association of Utah
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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: Candi Huff, Epilepsy Association of Utah
Phone: 801-557-0326
Press Contact: Jennifer Hardy-May, Hope 4 Children With
Epilepsy
Phone: 801-400-0046
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