Tuesday, January 19, 2016

Official Statement on Utah Bill HB75

       



FOR IMMEDIATE RELEASE
Student Advocacy Groups Oppose 
         Utah Bill HB75

SALT LAKE CITY January 16, 2016 - Epilepsy Association of Utah, Hope 4 Children with Epilepsy and Utah Kids Foundation jointly announce our opposition to HB75 Epilepsy Training in Public Schools with its current language.

While we support the effort to address the critical issue of rescue medication in Utah schools, HB75 falls short in many areas. The bill does not truly address the ignoring of the doctor-guided and federally-mandated 504 Health Care Plan, which ensures the ADA student’s right to an education in the least restrictive environment. Throughout the collaborative Individualized Education Plan (IEP) process, the 504 Health Care Plan is put in place with input from qualified school personnel, medical professionals and the student’s guardian.

HB75 would institute the Intranasal Midazolam Authorization Form. We believe this document may be considered contrary to the Federal Individuals with Disabilities Education Act (IDEA), as the Health Care Plan on record would effectively be ignored.

Only ONE rescue medication is included in HB75: Intranasal Midazolam. This medication is prescribed for about 49% of students with epilepsy, leaving the remaining 51% of the student population with seizures no recourse to receive their emergency medication.  We believe this would be a discriminatory practice in that some children with epilepsy would be supplied emergency support and others would not.

We also believe this bill perpetuates the stigma that epilepsy rescue medications are unsafe, when in fact caregivers with little to no medical training routinely administer them. HB75 lowers the standard of care for students with epilepsy by neglecting the needs of the ADA student, and compromising their safety, while trivializing their right to an education.

Although HB75 DOES allow for the delegation of medication to trained personnel, which we applaud, the practical application falls short by limiting input from the parent or physician. As has been experienced with the 2006 S.B. 8 Care of Students with Diabetes in School, staffs routinely fail to implement the law, forcing students with diabetes into homeschool situations and emergency room visits.

HB75 goes against the very core of morality and common sense in servicing the student in an emergency situation.

Signed
Epilepsy Association Of Utah
Board of Directors

Hope 4 Children with Epilepsy
Co-Founders

Utah Kids Foundation
Board of Directors
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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. 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.


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 over-all health, ability to function, and quality of life. These children also have 10 times increased risk for sudden death. We actively advocate for the medical needs of children and adults with epilepsy. Visit http://hope4childrenwithepilepsy.com.


ABOUT UTAH KIDS FOUNDATION
Utah Kids Foundation's mission is to support all special needs families in Utah by sharing information about doctors and resources in our community, facilitate the legal exchange of spare supplies, and to provide comfort and support when our children are inpatient. Currently serving nearly 2,000 families, we are now adding advocacy and providing inclusion in community events. Visit http://utahkidsfoundation.com/ for more information.




Monday, January 11, 2016

Crop Because You Care 2016!



FOR IMMEDIATE RELEASE
 Craftastic Fundraiser in its 15th year!

SALT LAKE CITY, Monday, January 11, 2016 - Fundraiser announced to fund campers’ adventures!

Sharpen the scissors, get the blocks all blocked, and the edges just right; the Epilepsy Association of Utah’s 15th annual scrapbooking event is on! 

Join us, once again, on February 20th, 2016 at the Viridian Center in West Jordan for 12 hours of crafting fun! You’ll be making memories while archiving them!  The Association also has spaces and classes planned for quilters, jewelers and more. This year is bigger, better and more inclusive!

“Utah’s premier scrapbooking event has been offering support and awareness to the epilepsy community for 15 years. As a beloved tradition, the Crop event continues to focus on getting kids with epilepsy to summer camp and provides the opportunity to expand the crafters knowledge, skills and friendships,” says Holly Ferrin, CAO/Executive Director.

As always, all proceeds from this landmark event directly benefit pre-teens and teens attending Camp Neuro Revolution and children ages 3-12 attending the newly introduced Boot Camp. We, at the EAU, are able to provide these life-changing experiences for youth with epilepsy all because you care!

Crop Because You Care
February 20th, 2016
10:00am – 10:00pm
Viridian Center
8030 South, 1825 West
West Jordan, UT. 84088


To purchase tickets please visit Eventbrite: http://tinyurl.com/EAUCBYC16

Did you join us last year? Or the year before? Or the year before that? Check the email you registered with us for a special discount!

For any additional questions or to become a vendor or sponsor, please contact the Committee Chairperson: Holly Ferrin at
holly@epilepsyut.org or 801-566-5949.

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ABOUT CROP BECAUSE YOU CARE
Since 2002, Crop Because You Care (CBYC) has been the premier scrapbook event in Utah. Raising money specifically for Camp Neuro Revolution, the event is a highly anticipated crafting extravaganza of creativity and fun! CBYC boasts 12 hours of creation, a silent auction, page competitions, well known guest speaker’s product vendors and individual classes.

ABOUT CAMP NEURO REVOLUTION
Our flagship offering for young adults, Camp Neuro Revolution (formerly Camp Spike and Wave) is geared to teens and pre teens ages 10 -18 who have epilepsy. Campers have enjoyed archery, crafts, cycling, horseback riding, rock wall climbing, ropes course challenge, swimming...YES SWIMMING... and more!

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://tinyurl.com/EAUCBYC16 for additional information.

Press Contact:        Candi Huff
Email:                     candi@epilepsyut.org

Website:                  http://tinyurl.com/EAUCBYC16

Wednesday, November 4, 2015

November is Epilepsy Awareness Month!

In honor of Epilepsy Awareness Month, the EAU has several events and a few fabulously fun things we are inviting you to participate in! While you are raising awareness, be sure to tag us in your social media photos! We'd love to include you in our year end video.

November 1st - Awareness Month Begins!


November 4th - Epilepsy Awareness Day at Disneyland Expo                        Paradise Pier Hotel

                        1717 Disneyland Dr
                        Anaheim, CA 92802

November 5th - Epilepsy Awareness Day at Disneyland!

                        1313 Disneyland Dr

                         Anaheim, CA 92802

November 7th - Purple Dash 5K -
                        East Riverfront Park Pavilion
                        10991 S Riverfront Parkway

                        South Jordan, UT 84095

Find us on Facebook tag #epilepsyutah
Follow us on Twitter
View us on Instagram


Let's see your purple!

Tuesday, October 6, 2015

Community Service Award Winners

“The best way to find yourself is to lose yourself in the service of others.”

Anyone that may have been feeling lost, was certainly found at the 3rd Annual Community Service Awards.  Every table was full and every heart was open. One simply can not be in a room of humanitarians and not come away feeling better about the world they live and their contribution to it. Hosted by Ben Winslow, sponsored by Lundbeck Pharmaceuticals and Sunovion Pharmaceuticals, catered by Apple Spice Junction with awards printed by McGee's Trophies and Gifts, the evening was inspiring, heart-wrenching and a little goofy. Do you have any #Selfies of the evening? We do!

While we await the professional pictures, please check out our fabulous award recipients.

Thank you to everyone for a wonderful evening.


Youth Advocate
Jordon Taylor
President’s Award: Chloee Bird

Advocate
Annette Maughan
President’s Award: Melanie Johnson

Keystone Award
Utah Kids Foundation

Commercial Partner
Utah’s Hogle Zoo
President’s Award: Purple Dash 5K

Memorials
Ashley Ann Call
Camille Call-Garcia

Medical Professional
Dr. Denise Morita, MD
President’s Award: Kim Orton

The Charlee Award
Annette Maughan

Youth Volunteer
Taylor Maughan
President’s Award: Amelia Connors

Dedicated Service Award
Glenn Maughan

Board Member of the Year
Nicole Young

Purple Star
Bethany Blackham
Christine Ferrin
Gail Ferrin
Candi and Jason Huff
Devin Young
Raymond Christy

Volunteer Group
Team Kid Courage
President’s Award: VIP Special Needs Sport’s League

Volunteer
David and Judy Hultgren
President’s Award: Pamela Bird

Lifetime Achievement Award
Dr. Tawnya Constantino


Sunday, September 20, 2015

Press Release - EAU celebrates volunteers

 FOR IMMEDIATE RELEASE
EAU celebrates volunteers!

SALT LAKE CITY, Sunday, September 20, 2015- The Epilepsy Association of Utah sets date for awards.

“The best way to find yourself is to lose yourself in the service of others.”

On Saturday, September 26th, 2015, Adobe Systems, Inc. will open its doors to the volunteers, members and staff of the Epilepsy Association of Utah to celebrate the 3rd Annual Community Service Awards. This Annual event celebrates the many individuals, companies and groups that volunteer their time, talents and people to furthering the cause of epilepsy awareness in Utah.

“As one of the oldest Nonprofits in Utah, we have had the opportunity to meet some of the most amazing people and companies. Utah truly is one of the most caring states, the most active in giving of themselves, and some of the most passionate people in the country,” Said Annette Maughan, CEO and President. “We would be remiss to not take this time to say Thank You to those people who have sacrificed to help people with epilepsy live more rewarding lives. These awards are a small token of the epilepsy community’s gratitude.”

Event Details:
Saturday, September 26th, 2015
Adobe Inc.
3900 Adobe Way
Lehi, Utah 84043
6:00-11:00pm, Cocktail Hour: 6:00-7:00pm, Dinner & Awards: 7:00-9:00pm, Dancing: 9:00-11:00pm

Public nominations were accepted the first two weeks in August at which time nominees were notified and voting began. All awards are based on the two top-vote getters in each category by public vote.

The awards are given out in seven categories and three committee-decided special recognition criteria:

Youth Advocate, Advocate, Commercial Partner, Medical Professional, Youth Volunteer, Volunteer Group, Volunteer

and

The Charlee Award, Keystone Award, Purple Star

Tickets can be purchased at: http://tinyurl.com/EpilepsyUtahCSA

Let’s Celebrate together!

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:        Candi Huff
Email:                     candi@epilepsyut.org
Website:                  www.epilepsyut.org


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