FOR IMMEDIATE RELEASE
OFFICIAL WORLD RECORD AWARENESS RIBBON ATTEMPT ANNOUNCED
Salt Lake City, UT July 28, 2012 – The Epilepsy Association of Utah (EAU) officially announces their acceptance by The Guinness Book of World Records to attempt to create the World’s Largest Awareness Ribbon.
The current record, as of Friday July 13th 2012 was achieved by Ummeed NGO (India), at Butchery ground, Cantt, Lucknow, India, on 6 May 2012 and measures 1005.7 m (3299 ft. 3.48 in).
Under the brand: Purple Ribbons for Epilepsy, the Association will attempt to break this record by completing a unified length of 1125 m (3375 ft) in a location yet to be announced.
“This attempt is a major undertaking for the Association” explains Annette Maughan, President of the Epilepsy Association of Utah. “For the last 39 years, the EAU has been working to bring awareness to the condition of Epilepsy and it’s prevalence in society. Once this ribbon is complete, it will signify the great efforts made by all the people who have worked with the EAU in the past 40 years and the millions of people globally who live with the condition. It says: We are here, we live with Epilepsy and we are a part of society too! It’s a great way to celebrate our upcoming 40th Anniversary.”
In an effort to break the record, the EAU will need 1125 yards of 45inch fabric, a place large enough to lay it out and monetary contributions of at least $10,000 dollars.
“We are looking to hire the official Guinness adjudicator to oversee our attempt.” Annette continued, “The Association will provide most of the manual labor, however, hiring the adjudicator is pricey. But we feel it is necessary. It’s not something we want to get so close to achieving and then disappoint because our math was flawed.”
The Association is in talks to have all of the fabric donated to accommodate the Guinness requirement:
“The finished ribbon must look like a single item, with separate sections sewed together to a high standard. If several sections are sewed together the ribbon should be the same colour/pattern throughout its length so that it looks like one continuous item.”
We are asking everyone who contributes at least one yard of fabric, and who are financially able, to also send a monetary donation to assist in this effort.
More information to follow as it becomes available.
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 150,000 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://www.epilepsyut.org for additional information.
Press Contact: Lindsey Palmer
Email: lindsey@epilepsyut.org
Website: www.epilepsyut.org
Wednesday, August 8, 2012
Tuesday, August 7, 2012
Purplelicious Pageant Date Change
With this Saturday coming up quickly, and our excitement for the Purplelicioua Pageant building, we are somewhat saddened to hear that the pageant must be postponed for a time.
Due to an unforeseen incident, it has become necessary to change the date of the Purplelicious Pageant from August 11, 2012 to September 15, 2012.
That gives the girls a few more weeks to brush up on their interview skills, finish hemming their gowns and practice their poses. So, keep your smiles polished...the show does go on!
The EAU wishes Patty and Courtney a big thanks and see you soon!
Visit Purplelicious Pageant Application to download your application today!
Please note: The application prices have also changed.
Due to an unforeseen incident, it has become necessary to change the date of the Purplelicious Pageant from August 11, 2012 to September 15, 2012.
That gives the girls a few more weeks to brush up on their interview skills, finish hemming their gowns and practice their poses. So, keep your smiles polished...the show does go on!
The EAU wishes Patty and Courtney a big thanks and see you soon!
Visit Purplelicious Pageant Application to download your application today!
Please note: The application prices have also changed.
Friday, July 20, 2012
Pretty in....Purple!
It's one thing to wear purple, it's quite another to be Purplelicious! Do you have what it takes to strut your stuff and show the world your fashionista? Maybe the Purplelicious Pageant is for you! Application deadline has been removed.
What: Purplelicious Pageant
When: September 15, 2012
Where: Best Western Cotton Tree Inn
Sandy, UT
Time: 9:00am - Registration
10:00am - Pageant
The Purplelicious Pageant is the brain child of Patty Gannon and her Granddaughter, Courtnie Bartholomeusz. Patty and Courtney are working to get the word out that Epilepsy is nothing to be feared, it is something you have, not something that has you. Be prepared, not only should you be lovely, you have to be lovely IN PURPLE. That's right, it's Purplelicious!
The EAU salutes Patty and Courtney and thanks them for raising awareness, one glittery fabulocity at a time!
Visit Purplelicious Pageant Application to download your application today!
What: Purplelicious Pageant
When: September 15, 2012
Where: Best Western Cotton Tree Inn
Sandy, UT
Time: 9:00am - Registration
10:00am - Pageant
The Purplelicious Pageant is the brain child of Patty Gannon and her Granddaughter, Courtnie Bartholomeusz. Patty and Courtney are working to get the word out that Epilepsy is nothing to be feared, it is something you have, not something that has you. Be prepared, not only should you be lovely, you have to be lovely IN PURPLE. That's right, it's Purplelicious!
The EAU salutes Patty and Courtney and thanks them for raising awareness, one glittery fabulocity at a time!
Visit Purplelicious Pageant Application to download your application today!
Friday, June 29, 2012
Dr. Charlotte Dravet to Visit Salt Lake City
FOR IMMEDIATE RELEASE
DR. DRAVET TO VISIT SALT LAKE CITY: REACHING OUT TO THOSE AFFECTED BY EPILEPSY
Salt Lake City, UT June 21, 2012 – At the invitation of the Epilepsy Association of Utah, world renowned French Epileptologist, Dr. Charlotte Dravet, will visit Salt Lake City on August 15-18, 2012. Dr. Dravet has agreed to meet patients affected by Dravet Syndrome, a rare form of Epilepsy named after her research efforts. Patients are invited to meet one on one with the doctor on Monday, August 13. Dr. Dravet will also be presenting an “Introduction to Dravet Syndrome” on August 14 from 9 – 11am for all medical professionals wanting to attend. Please RSVP to this event by visiting www.epilepsyut.org/dravet_registration.html.
“The opportunity presented to the people and medical community within Utah is unparalleled”, said Kris Hansen, President of The Epilepsy Association, “Never before has the Epilepsy Community in Utah had the occasion to meet someone of her caliber. We are honored that she agreed to spend so much time here. It’s a once in a lifetime chance”.
Schedule of Meetings/Events
Monday, August 13:
9:00am – 4:00pm Patient Visits at University of Utah
Tuesday, August 14:
12:00pm Lunch – By Invitation Only
2:00pm University of Utah Research Lab Tour
7:00pm Dinner with Dr. Dravet - A minimum donation of $75.00 a plate is suggested
Wednesday, August 15:
10:00am Lecture at University of Utah - MD only
If you would like to participate in any of these events or have any questions, please contact:
Jenn Whiting
jenn@epilepsyut.org
or
Kris Hansen
kris@epilepsyut.org
(801) 566-5949
ABOUT DR. DRAVET
Dr. Charlotte Dravet was mentored by Dr. Henri Gastaut (Lennox-Gestaut Syndrome) at the Centre St. Paul in Marseilles. Her interests were focused towards the explanationof syndromes in childhood Epilepsy, the psychological consequences of Epilepsy, the progressive Myoclonus Epilepsies and their genetics, the congenital malformations of the offspring of Epileptic women and related studies. Her main contribution was in Myoclonia Epilepsy; with emphasis on benign and severe Myoclonic Epilepsies in infancy. Dravet Syndrome, is now recognized as one of the most malignant syndromes at this age and is widely studied by other authors and clinicians as well as geneticists.
According to Davet.org, “Dr. Charlotte Dravet first described Dravet syndrome in 1978 as Severe Myoclonic Epilepsy of Infancy (SMEI). The first seizures usually happen before one year of age, with no known cause other than fever or illness. Seizures progress to be frequent and do not respond well to treatment. They also tend to be prolonged, lasting more than 5 minutes. Other types of seizures, which are common in Dravet Syndrome, appear in early childhood, including myoclonic seizures, atypical absence, complex partial seizures and nocturnal seizures. Estimates of the prevalence of this rare disorder range from 1:20,000 to 1:40,000 births.”
Dr. Charlotte Dravet has been President of the French League Against Epilepsy and a member of the Commission on Classification of Epilepsies of the ILAE. She has participated in numerous congresses, lectures and is the author of a number of published works. Now retired, she continues to work in France and Italy to improve the care of people with Epilepsy.
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 150,000 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://www.epilepsyut.org for additional information.
Press Contact: Lindsey Palmer
Email: lindsey@epilepsyut.org
Website: www.epilepsyut.org
www.dravet.org
DR. DRAVET TO VISIT SALT LAKE CITY: REACHING OUT TO THOSE AFFECTED BY EPILEPSY
“The opportunity presented to the people and medical community within Utah is unparalleled”, said Kris Hansen, President of The Epilepsy Association, “Never before has the Epilepsy Community in Utah had the occasion to meet someone of her caliber. We are honored that she agreed to spend so much time here. It’s a once in a lifetime chance”.
Schedule of Meetings/Events
Monday, August 13:
9:00am – 4:00pm Patient Visits at University of Utah
Tuesday, August 14:
12:00pm Lunch – By Invitation Only
2:00pm University of Utah Research Lab Tour
7:00pm Dinner with Dr. Dravet - A minimum donation of $75.00 a plate is suggested
Wednesday, August 15:
10:00am Lecture at University of Utah - MD only
If you would like to participate in any of these events or have any questions, please contact:
Jenn Whiting
jenn@epilepsyut.org
or
Kris Hansen
kris@epilepsyut.org
(801) 566-5949
ABOUT DR. DRAVET
Dr. Charlotte Dravet was mentored by Dr. Henri Gastaut (Lennox-Gestaut Syndrome) at the Centre St. Paul in Marseilles. Her interests were focused towards the explanationof syndromes in childhood Epilepsy, the psychological consequences of Epilepsy, the progressive Myoclonus Epilepsies and their genetics, the congenital malformations of the offspring of Epileptic women and related studies. Her main contribution was in Myoclonia Epilepsy; with emphasis on benign and severe Myoclonic Epilepsies in infancy. Dravet Syndrome, is now recognized as one of the most malignant syndromes at this age and is widely studied by other authors and clinicians as well as geneticists.
According to Davet.org, “Dr. Charlotte Dravet first described Dravet syndrome in 1978 as Severe Myoclonic Epilepsy of Infancy (SMEI). The first seizures usually happen before one year of age, with no known cause other than fever or illness. Seizures progress to be frequent and do not respond well to treatment. They also tend to be prolonged, lasting more than 5 minutes. Other types of seizures, which are common in Dravet Syndrome, appear in early childhood, including myoclonic seizures, atypical absence, complex partial seizures and nocturnal seizures. Estimates of the prevalence of this rare disorder range from 1:20,000 to 1:40,000 births.”
Dr. Charlotte Dravet has been President of the French League Against Epilepsy and a member of the Commission on Classification of Epilepsies of the ILAE. She has participated in numerous congresses, lectures and is the author of a number of published works. Now retired, she continues to work in France and Italy to improve the care of people with Epilepsy.
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 150,000 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://www.epilepsyut.org for additional information.
Press Contact: Lindsey Palmer
Email: lindsey@epilepsyut.org
Website: www.epilepsyut.org
www.dravet.org
Monday, April 16, 2012
Register for Camp Neuro Revolution
WHAT:
Camp
Neuro Revolution (previously known as Camp Spike and Wave) is a camp
for youth with Epilepsy (seizure disorders).
WHEN:
Camp will be held from Wednesday, July 18th to Saturday, July 21st.
WHERE:
Camp
is located in Park City, Utah, at the National Ability Center.
APPLY
NOW!
Please fill out the form below to the best of
your ability to ensure a spot at Camp for your child - a time stamp* is
included upon your submission and beds are limited!
Your
submission will be outputted to a spreadsheet that is directly
associated with this Google Form.
Please note
that the EAU will not distribute or sell any of your information that
you submit.
MAIL-IN OPTION &
OTHER CONCERNS:
If you would prefer to mail in the basic
application (similar to the questions below) have any questions or
concerns please contact Holly E. Ferrin
- via text/voice: (801) 931-9629
- via email: holly@epilepsyut.org
*NOTE:
This year's registration is on a first-come-first-serve basis so save
your child's spot and apply now! Additionally,
please note that there will be other paperwork you will need to fill out
prior to the first day of Camp, which includes release forms, medical
forms, as well as information forms for the National Ability Center.
Additional Note:
SPONSORS, VOLUNTEER STAFF, NURSES, AND INTERPRETERS ARE NEEDED!
Please email Holly for more information on how you can help Camp Neruo Revolution be a success.
- holly@epilepsyut.org
Friday, April 6, 2012
Camp Neuro Revolution 2012 - Preview: The Cargo Net
Get ready for a Camp for youth with Epilepsy that has been Revolutionized!
The Epilepsy Association of Utah (EAU) presents a preview of one of the high ropes course elements you can expect to participate on when you come to Camp Neuro Revolution (formerly known as Camp Spike and Wave).
Camp Neuro Revolution is a 4 day, 3 night summer camp for the youth of Utah ages 10-18 who have Epilepsy or seizure disorders. It is located in spacious and glorious Park City, Utah, at the National Ability Center.
To get more details about Camp, such as cost, paperwork, as well as other concerns, please contact our Camp Director, Holly E. Ferrin
- Phone: (801) 931-9629
- Email: holly@epilepsyut.org
Find the EAU on Twitter @EpilepsyUTAH
Find the EAU on Facebook @Epilepsy Utah, as well as @Epilepsy Association of UT
The Epilepsy Association of Utah's Website: www.epilepsyut.org
Crop Because You Care 2012: Preview
The Epilepsy Association of Utah (EAU) presents a preview of the 11th annual Crop Because You Care fundraiser.
Do you like to scrap-book? Do you, or does someone you know, have epilepsy? Do you like gettin' crafty for a cause? Well then, the 11th annual Crop Because You Care is the place to be for you.
"Crop the day away with your friends and family, get great ideas from the other scrappers, and learn from some of the best. A great excuse to get out and be creative! Entry price is $25.00 for the all day pass... Enjoy up to 12 hours of demonstrations, vendor booths, speakers, and creative fun. Bring your supplies and pictures along with any ideas you'd like to share"
Here are some comments that were made on the Crop Because You Care Facebook page in reference to CBYC 2010:
Nadine Jones Anderson said, "My sister and I have come for the last 8 years (I wish we new about it one year sooner!) and my daughter has benefited by attending camp twice! Thanks so much!"
Alina Dannette Burk said, "I get so excited every time CYBC comes around! I have attended every year since it began 9 years ago. I simply cannot imagine missing this event!"
Cindee Stoker Nielsen said, "My sister, mom and I have been coming to CBYC every year since it started. This year Mom has to drive four hours to get here, but we'll still be there - thanks for providing us the opportunity to get together and enjoy our favorite hobby."
The above comments are just a few of the great things heard about CBYC, if you can't believe it, come and see for yourself, this year on April 28th, 2012 at the South Towne Expo Center!
If scrap-booking isn't your thing, you can still get involved with this great cause. "The crop... has raised thousands of dollars to help the Association provide services to people dealing with the many challenges of epilepsy." If you would like to donate items to be raffled, auctioned, or if you would like to be a sponsor of this year's Crop Because You Care you can contact the EAU's office, at (801) 566-5949 or Bethany at bethany@epilepsyut.org.
For more information regarding sponsorship and donations (as well as a lot of other information) you can visit the Crop facebook page and/or the web-page within the epilepsyut.org website.
http://www.epilepsyut.org/events.html
Find the EAU on Twitter @EpilepsyUTAH
Find the EAU on Facebook @Epilepsy Utah, as well as @Epilepsy Association of UT
The Epilepsy Association of Utah's Website: www.epilepsyut.org
Do you like to scrap-book? Do you, or does someone you know, have epilepsy? Do you like gettin' crafty for a cause? Well then, the 11th annual Crop Because You Care is the place to be for you.
"Crop the day away with your friends and family, get great ideas from the other scrappers, and learn from some of the best. A great excuse to get out and be creative! Entry price is $25.00 for the all day pass... Enjoy up to 12 hours of demonstrations, vendor booths, speakers, and creative fun. Bring your supplies and pictures along with any ideas you'd like to share"
Here are some comments that were made on the Crop Because You Care Facebook page in reference to CBYC 2010:
Nadine Jones Anderson said, "My sister and I have come for the last 8 years (I wish we new about it one year sooner!) and my daughter has benefited by attending camp twice! Thanks so much!"
Alina Dannette Burk said, "I get so excited every time CYBC comes around! I have attended every year since it began 9 years ago. I simply cannot imagine missing this event!"
Cindee Stoker Nielsen said, "My sister, mom and I have been coming to CBYC every year since it started. This year Mom has to drive four hours to get here, but we'll still be there - thanks for providing us the opportunity to get together and enjoy our favorite hobby."
The above comments are just a few of the great things heard about CBYC, if you can't believe it, come and see for yourself, this year on April 28th, 2012 at the South Towne Expo Center!
If scrap-booking isn't your thing, you can still get involved with this great cause. "The crop... has raised thousands of dollars to help the Association provide services to people dealing with the many challenges of epilepsy." If you would like to donate items to be raffled, auctioned, or if you would like to be a sponsor of this year's Crop Because You Care you can contact the EAU's office, at (801) 566-5949 or Bethany at bethany@epilepsyut.org.
For more information regarding sponsorship and donations (as well as a lot of other information) you can visit the Crop facebook page and/or the web-page within the epilepsyut.org website.
http://www.epilepsyut.org/events.html
Find the EAU on Twitter @EpilepsyUTAH
Find the EAU on Facebook @Epilepsy Utah, as well as @Epilepsy Association of UT
The Epilepsy Association of Utah's Website: www.epilepsyut.org
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