Monday, February 9, 2015

Epilepsy Association supports 2015 Legislative efforts













For Immediate Release

EAU & H4CE Announce
Support of HB94 “Right to Try” & HB199 “Pilot Program for
Assistance for Children With Disabilities & Complex Medical Conditions”


SALT LAKE CITY, Utah – Monday, February 9, 2015

The Epilepsy Association of Utah and Hope 4 Children With Epilepsy announce their support of HB94 “Right to Try” & HB199 “Pilot Program for Assistance for Children with Disabilities and Complex Medical Conditions.”

Rep. Gage Froerer’s HB94 “Right to Try” would allow terminally ill patients access to treatments not yet approved by the FDA. Patients are required to try all viable approved options before moving to an experimental treatment, and the new treatment must have completed Phase 1 trials. Pharmaceutical and insurance companies are allowed, but not required, to provide these treatments and may charge patients only the manufacturing cost.

Cristina Might, mother of an H4CE child and executive director of the NGLY1 Foundation, explains the dire situation for those with rare terminal illnesses. “Bertrand is going to die without treatment--slowly going deaf, blind, wasting muscles, losing nerve and brain matter. And maddeningly, we know for a fact that a drug in clinical trials called EPI-743 does a partial rescue in his cells (and that of all the other kids with NGLY1). The FDA guidelines were written for a different era. They have not caught up with the advances in technology that make precision treatments possible. A "right to try" has gone beyond being a "right for hope".  With new medical breakthroughs, it is the right to an effective, existing treatment.”

With HB199 “Pilot Program for Assistance for Children with Disabilities and Complex Medical Conditions” sponsored by Rep. Ed Redd, the bill directs the Department of Health to apply for a Medicaid waiver for children with disabilities and complex medical conditions. Currently, very few people served by the Division of Services for People with Disabilities are children. The wait list is many hundreds of people long, and those with complex medical conditions do not qualify if they are without intellectual disability.

Families on the wait list have incomes too high to qualify for Medicaid, yet the financial, physical and emotional burden of caring for a disabled or medically complex child often results in bankruptcy, divorce, depression, loss of employment, and trauma to siblings. Tragically, in some cases, failies are left with no other option but to sign away their parental rights so their children can get the care they critically need. By reducing their cost of care, HB199 would provide enough assistance to help families keep their disabled children at home.

Jennifer May, co-founder of Hope 4 Children With Epilepsy stated, “Many families in our group fall into this gap where there is no help and no hope. Only one parent can work, and even with insurance the medical bills pile up. There are necessary treatments and supplies not covered by insurance, and  no funds left to pay for caregiver help. The financial stress, combined with the exhaustion of caring for a disabled child, cause families to crumble and become desperate. We need to make these children and families a priority. This bill will do that.”

#####

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, medical and transportation assistance programs, 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


Thursday, November 27, 2014

Order your QR Life Support Bracelet or Dog Tags NOW!

With Gift Giving Season just around the corner, the Epilepsy Association of Utah is happy to announce that QR Life Support will be donating $1 for each active Bracelet or Dog Tags to the EAU every month!
 
You normally can't put a price on peace of mind, but this time, maybe you can!
 
The Bracelet or Dog Tags are FREE, just pay $3.95 S&H!  Enter all pertinent medical information online and pay $2.99 per month for maintenance.  In the event of an emergency, medical personnel can access the information quickly.
 




Saturday, November 1, 2014

Epilepsy Awareness Wreaths Available NOW!

November is upon us!

The Epilepsy Association of Utah presents an amazing way to raise #EpilepsyAwareness all month long!

Email Candi@EpilepsyUT.org now and order yours TODAY!

Sunday, September 28, 2014

Community Service Awards

Black and White and Red and Purple and Teal and Orange, The Community Service awards were all the colors of a rainbow! And twice as beautiful. Led by Gene Kennedy and rocked by Craig Chambers, the evening was filled with appreciation, dancing and a fabulous amount of beautiful people being acknowledged for their fantastic efforts. Established to recognize those people and entities within Utah who advance the cause of epilepsy awareness and understanding, the 2nd Annual Community Service awards were held at Adobe in Lehi with 100 in attendance at the Black and White event.


Pictures soon, but until then, check out our amazing award recipients:

Results are presented by category. 

Medical Professional:
Dr. Francis Filloux - MD of the Year
Dr. Denise Morita - President's Award for Outstanding Medical Professional
Dr. Matthew Sweney - President's Award for Outstanding Medical Professional
Kim Orton - President's Award for Outstanding Medical Professional
Volunteer Group:
Hope 4 Children With Epilepsy - Volunteer Group of the Year
Laps for Lyndsay
President's Award for Outstanding Volunteer Group
Utah Kids
President's Award for Outstanding Volunteer Group
Purple Dash 5K
Purple Star Award for Outstanding Volunteer Group
Volunteer:
Keri Beardall - Volunteer of the Year
Christine Ferrin - President's Award for Outstanding Volunteer
David and Judy Hultgren- President's Award for Outstanding Volunteers
Cameron May - Purple Star Award for Outstanding Volunteer
Jenn Whiting - Purple Star Award for Outstanding Volunteer
April Sintz - People's Choice Award
Youth Volunteer:
Rachel Hair - Youth Volunteer of the Year
Taylor Maughan - President's Award for Outstanding Youth Volunteer
Demi Sintz - President's Award for Outstanding Youth Volunteer
Makayla May - Purple Star Award for Outstanding Youth Volunteer
Advocate:
Laura Warburton - Advocate of the Year
Emilie Campbell - President's Award for Outstanding Advocate
Lulu Hammond - President's Award for Outstanding Advocate
Charlie and Mandy Lynch - President's Award for Outstanding Advocate
Sarah Nitta - Purple Star Award for Outstanding Advocate
Holly Ferrin - People's Choice Award
Syndi Knowlton - People's Choice Award
Glenn and Annette Maughan - People's Choice Award
Jennifer May - People's Choice Award
April Sintz - People's Choice Award
Youth Advocate:
Demi Sintz - Youth Advocate of the Year
Savannah Spacil - President's Award for Outstanding Youth Advocate
Jaime Chadwick - President's Award for Outstanding Youth Advocate
Bertrand Might - Purple Star Award for Outstanding Youth Advocate
Commercial Partner:
Living Planet Aquarium - Commercial Partner of the Year
Adobe Systems - President's Award for Outstanding Commercial Partner
National Ability Center - President's Award for Outstanding Commercial Partner
Futura Industries - Prurple Star Award for Outstanding Commercial Partner
Lundbeck - Purple Star Award for Outstanding Commercial Partner
MassMutual SpecialCare - Purple Star Award for Outstanding Commercial Partner
Keystone Award:
Senator Patricia Jones
Representative Marie Poulson
Representative Paul Ray
Senator Steve Urquhart
Dedicated Service Award:
Janis Hardy
Charlee Nelson
Charlee Award
Representative Gage Froerer
Person of the Year
Laura Warburton
Lifetime Achievement Award
Dr. Steve White

Saturday, September 13, 2014

Just Dance!

Can't make the ball but don't want to miss the fun?  Join us for the After Party and JUST DANCE!  Register now!  http://epilepsyut.org/CSA_Registration.html





Friday, September 12, 2014

RSVP Now!

You don't want to miss this!  Click here to RSVP today!