Epilepsy Association of Utah

Author: Annette

HB424 Endorsed by Epilepsy groups
















EAU & H4CE Announce
Support of HB424 “Epilepsy Training in Public Schools”
SALT LAKE CITY, Utah – Thursday,
March 5, 2015
The
Epilepsy Association of Utah and Hope 4 Children With Epilepsy announce their
support of HB424 “Epilepsy Training in Public Schools”, a bill introduced last
week by Rep. Doug Sagers. The bill requires that school districts allow the administration of
epilepsy rescue medications to students, as prescribed by a physician, and
provide training to volunteer “first responders” who are willing to administer
the medication as needed.
A
family in Rep. Doug Sager’s district brought this issue to him, as they are
concerned with their school’s seizure response protocol for their child. Because
each school district establishes their unique guidelines for seizure response, some
districts elect not to allow the administration of rescue medications, instead
requiring that school personnel call 911 and wait for emergency responders to
arrive and treat the seizure or transport the student to a hospital for
treatment. This process results in varying and unpredictable lengths of time
between seizure start time and treatment. Students suffer through their seizures
until emergency personnel begin treatment that could be initiated promptly and
safely by volunteers at the scene.
HB424
does not require school personnel to administer rescue medication. It directs
schools to allow volunteers to treat seizures, as outlined by a physician, and
requires that school nurses arrange for the training of such volunteers. The
bill also protects district nurses, school personnel, and volunteers from
liability for such treatment.
“This
bill addresses a critical gap in emergency care management for students with
epilepsy and related seizure disorders”, says Holly Ferrin, executive director
of the Epilepsy Association of Utah. “Additionally, this bill empowers and
supports school personnel in rendering potentially life-saving assistance. The
EAU is thankful for the gracious work Representative Sagers is putting forth,
and we fully support HB424.” 
HB424 is listed on the agenda for Health and Human
Services Committee today at 4:10pm.
#####
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

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

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.
 

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

Seize: The Story – Taylor Ferguson

Monday, September 1, 2014

 
Seize:  The Story – Taylor Ferguson
 
 
Nobody
knew I was having seizures, not even my parents. I just thought I was having
blackouts as I would call them, until I went to my guitar lesson and had one of
my “blackouts”.  My guitar
teacher worked with epileptics so she knew I had just had a seizure.  I remember peeking around the corner and
wondering why my guitar teacher was at my house, what they were talking about
and why my mom was crying?  We then took
a visit to a doctor’s office…it was true, I had epilepsy, but at the age of
nine I had never heard of epilepsy before, so I just thought it was like the
flu and would go away.  The day I
realized it wouldn’t go away I cried myself to sleep.

School was
hard!  I lost almost all of my friends
because they thought I was “contagious” and when I explained to (my
at the time best friend) that I wasn’t she just said “okay” and
walked away.  See if you were friends
with me you couldn’t be popular.  It took
me awhile to really realize what happened with my best friend; at the time
everything was crashing in on me.  I got
made fun of all the time; it was so bad my mom put me in home hospital.  When I was having a lot of seizures I would
be home with a tutor but when they would get under control I would go back to
normal school.  I then went to a charter
school in eighth grade just so I could get away from all the kids that knew
about my epilepsy and would make fun of me. 
When I was sixteen I had brain surgery and had a piece of the brain
removed to try and stop my seizures, so I was out of school my sophomore year.
I then went back to school my junior year of high school.  But with only the people from my elementary
knowing me, well you would think high school kids would be more mature, no some
of them still made their stabs at me I was just not as affected by it and knew
how to stand up for myself.

About two
years after my brain surgery I was going to get my driver’s license, the day
before I was going to take the driver’s test I had another seizure.    My
parent’s and I started looking into other options. We then decided to have a
VNS (Vagus Nerve Stimulator) implanted. 
We decided to have the VNS surgery (which is a device like a pace maker
that is hooked to the vagus nerve and sends shock waves through my brain every
3 minutes for 30 seconds to try to stop or lessen the severity of my seizures
or after affects), about six months to a year later the VNS stopped working and
I gave up all hope.  Nothing had worked and
there was nothing left to do; pills didn’t work and there was no surgery left.

I never
thought that I would get married because of my epilepsy but when I was twenty
one I found the greatest guy in the world, who loved me for me and didn’t care
that I had epilepsy like a lot of the other guys out there.  So he proposed and I said “yes” and
we were married about six months later. A little while later I got pregnant and
I had an ectopic pregnancy (where the baby is growing in the Fallopian tube),
but two years later I got pregnant again and had a daughter in May 2014.

Granted I
have been talking about my epilepsy, so it hasn’t been the best of memories. My
life hasn’t been all bad.  I have an
amazing family, daughter, husband, and friends, have had awesome vacations to
Bear Lake, Pinedale, Disney World/Florida, Disney Land, Island Park and many
more.  I have had a great life with many
bad experiences but I wouldn’t take them back for anything because they have
made me who I am today. 

I hope this
helps someone out there in some way!

Taylor A. Zobell Ferguson

Epilepsy Association of Utah & Hope 4 Children With Epilepsy – Federal Call to Action

For Immediate Release 

Epilepsy Association of Utah &
Hope 4 Children With Epilepsy
Federal Call to Action
SALT LAKE CITY, Utah – Tuesday,
August 26, 2014
One year ago today, the
Epilepsy Association of Utah became the first epilepsy organization in the
United States to take a stance in support of expanding treatment options to
include high-CBD/low-THC cannabis extracts. Since that time, dozens of organizations have
followed suit, leading to the passage of HB105 “Charlee’s Law” in Utah and
similar bills across the nation.
The Epilepsy Association of Utah and Hope 4 Children with Epilepsy
have withheld public support of federal legislation until today. We have now
chosen to openly support federal bill H.R. 5226: Charlotte’s Web Medical Hemp
Act of 2014, sponsored by Rep. Scott Perry (R – PA), and will work toward its
passage. The bill proposes to exclude industrial hemp and cannabidiol (CBD)
from the definition of marijuana, granting those suffering with epilepsy access
to the treatment according to the laws of their own states. Industrial hemp is
defined as cannabis with THC content below .3%.
“A federal change in policy regarding cannabis is essential,’ said
Annette Maughan, President and CEO of the Epilepsy Association of Utah, “My son
can be treated with cannabis openly in Utah, but he can’t go to Disneyland with
his family? All because his oil is grown in the United States? The incongruity
of that is staggering.”

We welcome the addition of other federal bills regarding the rescheduling of
cannabis and reserve the right to evaluate each on the merits of its potential
impact. The federal stance that cannabis holds no medicinal value places it on
Schedule 1 of the DEA’s list of controlled substances:

“Schedule I
drugs, substances, or chemicals are defined as drugs with no currently accepted
medical use and a high potential for abuse. “

With the published reports of success in treating epilepsy, among other
conditions (http://hope4childrenwithepilepsy.com/research-links/), the claim of
“no medical use” is no longer valid; therefore, cannabis should be rescheduled.
Because cannabis is currently listed on Schedule 1, research and compassionate
use are very difficult to accomplish, even with the involvement of medical
specialists and research institutions. This needs to change.
We call upon all federal legislators to join us in this very
critical and urgent cause by supporting and/or co-sponsoring H.R. 5226:
Charlotte’s Web Medical Hemp Act of 2014. 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.
The language for H.R. 5226: Charlotte’s Web Medical Hemp Act of
2014 can be found at https://www.govtrack.us/congress/bills/113/hr5226/text.
#####
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: Jennifer May
Phone:                    801-400-0046
Email:                      jennifer.h.may@gmail.com
Website:               www.epilepsyut.org
Website:               www.hope4childrenwithepilepsy.com