HB 94: Utah "Right To Try" Act

HB 94 is Utah's "Right to Try" Act.  Right to Try allows terminally ill patients access to investigational medications and devices that have completed FDA phase one safety testing.

We are extremely grateful to Jonathan Johnson, Rep. Gage Froerer, the Goldwater Institute, and fellow rare advocates Jen and Stan Summers for helping to get this important piece of legislation to the floor.  

Many thanks to Jen (Talan's mom) for the photos!

Obama

I fell off the blog post wagon because THIS happened last week.

Kids are sick, Matt is out-of-town, but life is busy and beautiful.

PS-If you live in Utah, you better register for Rare Disease Day!

3rd Annual RARE Patient Advocacy Summit

The Global Genes Project’s 3rd Annual RARE Patient Advocacy Summit will be held Sept. 11-12 at the Hyatt Regency Resort & Spa in Huntington Beach, CA.

It’s a chance to learn all about being a patient advocate, proactive and productive in efforts to better the lives of those with rare disease; to be an effective advocate in lobbying elected officials and reach out to major pharmaceutical companies, forming a relationship to bring drugs to patients.

More than 200 participants are expected to attend. For those who can’t be there in person, the conference is also available to view via Livestream. To register for the FREE Livestream Event, please go to: http://globalgenes.org/2014-summit-livestream-registration.

This year’s sessions include:

• Caregiving: Strategies for Staying Afloat, Presented by Caregiver Action Network
• The E-Patient Revolution, Presented by Health 2.0 and Smart Patients
• Patient-Centered Benefit-Risk Assessment, Presented by FasterCures
• Making your organization an “Unstoppable Charity”
• Lobbying at the State and Federal Level
• Transition & Transformation with Rare Disease from Adolescence to Adulthood.
• Must Have Collaborations for Successful Drug Development

 Two new sessions this year:

• Deep Dives: Branched-off discussions that will allow small groups to interact with subject matter experts to help them go more deeply into the content of each session have been added to the agenda.
• Science Briefs: 15-minute science pitches with 5 minutes of Q&A, discussing some of the most promising innovations in science.

Those who watch on Livestream can participate via twitter and Facebook using the hashtag #2014GGSummit.

Read more about the summit here. To register, visit globalgenes.org/events.

3rd Annual RARE Patient Advocacy Summit

3rd Annual RARE Patient Advocacy Summit

September 11-12, 2014
Hyatt Regency Resort & Spa, Huntington Beach, California

Register today!
 

What if you could learn EVERYTHING you needed to know about being a patient advocate in just two days? What if you could learn how to be prepared, proactive, and productive in your efforts to better the lives of those with rare disease? What if you could be an advocate with the know-how to lobby congress and effect change? What if you felt you really had the ability to reach out to the largest pharmaceutical companies in the world—and form a powerful relationship to bring drugs to patients now?
 
This is what over 200 participants will be learning in-person, and over 5,000 via Livestream during the Global Gene’s 2014 RARE Patient Advocacy Summit, September 11-12, at the Hyatt Regency Resort & Spa in beautiful Huntington Beach, CA.

 

This year, participants can expect more tools, experts, and exploration than ever before. Everything has changed. The feedback we received from the last few years has been positive, but what we now understand is how much more depth our community wants and needs on topics related to their rare disease journey—and we’re determined and ready to give them that!

This year’s sessions, lead by an extraordinary team of experts, include modules on:

• Caregiving: Strategies for Staying Afloat, Presented byCaregiver Action Network
• The E-Patient Revolution, Presented by Health 2.0 andSmart Patients
• Patient-Centered Benefit-Risk Assessment, Presented byFasterCures
• Making your organization an “Unstoppable Charity”
• Lobbying at the State and Federal Level
• Transition & Transformation with Rare Disease from Adolescence to Adulthood.
• Must Have Collaborations for Successful Drug Development

Also NEW this year:

• Deep Dives - branched-off discussions that will allow small groups to interact with subject matter experts to help them go more deeply into the content of each session have been added to the agenda.
• Science Briefs -15 minute science pitches with 5 minutes of Q&A, discussing some of the most promisingInnovations in Science.

Can’t attend in person? Our new Livestream component will allow up to 5,000 advocates from around the globe to attend virtually via webcast at no cost! The event will be broadcast live with opportunities for patients to participate from afar using social media such as twitter and Facebook, using the hashtag #2014GGSummit.

 

Read more about the RARE Patient Advocacy Summit here.

To register for this event (in-person or via Livestream), please visit: http://globalgenes.org/events

"Parental Might"

Our family was recently featured in the summer issue of Sanford-Burnham Medical Research Institute's "Portal".  It's a lovely feature on pioneering N-glycanase deficiency research through Dr. Hudson Freeze's laboratory and the Bertrand Might Research Fund.  
We began funding Hud's NGLY1 research in mid-2012, and went to visit the lab shortly thereafter in August 2012.  Our fabulous post-doc Ping He has done and continues to do a great job pushing the science for our kids.  We're proud to support the Freeze lab.  :)

2014 Epilepsy Education Conference

Get Seizure Smart! Educational ConferenceJoin us for the 7th Annual Get Seizure Smart! Educational Conference.

June 7th, 2014
8am to 4pm
Little America
500 S Main St
Salt Lake City, UT
84101 

To Register - please fill out this form and remit payment.

"Change is the end result of all true learning."
- Leo Buscaglia

This past year, the changes that have occurred in the epilepsy community include new diagnostic tools, new treatments and more research into what causes epilepsy and what can help stop seizures. The EAU is pleased to have some of the experts in this field of study and practice, speaking at our annual Get Seizure Smart! Education Conference.

Some of the respected speakers include:

Keynote Address:

---

Genetics of Epilepsy: The Role of Dravet Syndrome
Dr. Ian Miller - Miami Children's Hospital


Special Guest Speakers:

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Cannabidiol for Seizure Management
Heather Jackson - Executive Director - Realm of Caring

Epilepsy 101 for Adults
Dr. Jeffrey Bigelow, MD, MPH - Neurologist at Intermountain Medical Center

Epilepsy 101 for Pediatrics
Dr. Matthew Sweney, Assistant Professor, Pediatrics and Neurology - Primary Children's Hospital

The State of Cannabis Oil
Jennifer May, Co-Founder: Hope 4 Children with Epilepsy,

The genetics of epilepsy and personalized medicine: What does the future look like?
Dr. Reid Robison, Chief Executive Officer, Tute Genomics Inc.


Honored Speakers:

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The Practical Application of Chiropractics for Epilepsy
Dr. K.C. Oliver - Board Certified Chiropractic Neurologist, Founding Partner - The Neuro Clinic in Lehi UT

Trusts and Living Wills
Jared Allebest - Adjunct Professor, UVU - Owner, Allebest Law Group

Empowering Parents: Caregiver resources and how to use them.
Kim Orton - Pediatric Epilepsy Care Coordinator for the University of Utah, School of Medicine at Primary Children's Hospital.

Funding, Medicaid and SSI
Jodi Hansen - Utah Parent Center and Utah Family Voices.

Neuropsychological, Behavioral, and Social Challenges Associated with Epilepsy
Dr. Jenise Jensen - Pediatric Neuropsychologist

My Personal Experience and Accepting Epilepsy
Chris Connor - Youth Leader, Epilepsy Association Board of Directors

Essential Oils and Mental Health
Leslie Reader - Wellness Advocate 

CNN: New Genetic Disorder Discovered

Kids who don't cry: New genetic disorder discovered

By Jacque Wilson, CNN

updated 2:53 PM EDT, Thu March 20, 2014

Grace Wilsey was born with NGLY1 deficiency, which is caused by two mutations in the NGLY1 gene.

(CNN) -- What do you do when your baby lies limp in your arms, staring blankly into the distance while never crying?

What do you do when tests show signs of liver damage and your baby's seizures won't stop, but doctors can't tell you what's wrong or how to fix it?

Thanks to the Human Genome Project, which was completed in 2003, identifying new genetic mutations has gotten easier and cheaper. But geneticists often struggle to find patients who share these rare DNA quirks. Studying multiple patients with the same gene mutations and similar symptoms is crucial to identifying a new genetic disorder.

That's why a paper published Thursday in the journal Genetics in Medicine is so remarkable.

The paper identifies NGLY1 deficiency as an inherited genetic disorder, caused by mutations in the NGLY1 gene. The researchers have confirmed eight patients with these mutations who share several symptoms, including developmental delays, abnormal tear production and liver disease.

And they credit an "Internet blog" with bringing the patients and scientists together.

Read the FULL STORY at CNN.com

House Bill 105

Even though it only just got introduced to the House, we hope H.B. 100 will go far.

The recently introduced Utah House Bill 105 would permit the importation and administration of cannabis oil (high CBD, low THC) extract for the treatment of epilepsy in adults and children under medical supervision in Utah.

The text of just one of the letters I wrote in support of this legislation is below.  Please visit Hope for Children with Epilepsy (the organization spearheading the effort to bring this treatment to Utah) for more information on how you can help.

February 4, 2014

Senator Jim Debakis

54 B Street

Salt Lake City, UT 84103

Dear Senator Debakis,

As your constituent (twice over), I am writing on behalf of my family to ask you to support of Rep. Gage Froerer’s House Bill #105 when it reaches the Senate—and I certainly hope it will! 

My 6 year-old son Bertrand “Buddy” Might is one of the potential beneficiaries of this piece of legislation, which would legalize the medical use of high-CDB, low-THC hemp extract.  

Buddy suffers from a rare genetic disorder called N-glycanase deficiency and suffers severe, intractable seizures as a result.  

His genetic condition is one of cellular metabolism so it also affects his liver, leaving heavy scarring (fibrosis).  For most existing seizure medications, liver failure is a side-effect for individuals with healthy livers. 

  My son does NOT have a healthy liver, so we are currently left with the choice between (A) leaving his seizures unmedicated and having his seizures kill him quickly or (B) medicating his seizures and waiting for his liver to kill him.   

No patient (or their parents) should ever have to face this tragic choice, if possible.

We have currently chosen Option B, but House Bill #105 would give us a much more appealing Option C: medicating our son’s seizures without damaging his liver.  (While CBD is metabolized in the liver, it is not as toxic as existing anti-eplieptic drugs.)

It is my sincere hope that you already support this bill and my letter only reinforces your position, but if you do not, please, please, please help pass H.B. 105!

This crucial piece of legislation is the only hope for many children like my son.

Thank you for your time and support!

Sincerely,

Cristina Might

Story featuring Bertrand wins multiple awards!

"SAVING BUDDY"

Utah couple races to help son with unique genetic disorder

Dogged SLC parents are hopeful science can help their 4-year-old boy, diagnosed with a unique, deadly health condition.

By Kirsten Stewart | The Salt Lake Tribune
First Published Nov 25 2012

Last Thanksgiving, the Salt Lake Tribune ran a full page cover story on Bertrand.   The story, written by the talented Kirsten Stewart, has since won multiple awards!  Our heartfelt congratulations go out to Kirsten and the rest of her team at the Trib.  It was a wonderful story and the awards are well-deserved.

Utah Press Association 2013 First Place, best feature series
Utah Society of Professional Journalists 2013 Second Place, medical/science reporting
Top of the Rockies 2013 First Place, health reporting

5th Annual "National Believe Day"

Bertrand and Victoria dropped off letters to Santa at Macy's. For each letter received, Macy's will donate $1 to Make-A-Wish Foundation. And on December 14th, their 5th annual "National Believe Day", Macy's will donate $2 per letter to Make-A-Wish.

Many of our dear friends have benefitted from the generosity of the Make-A-Wish Foundation, and it's quite likely that some day Bertrand will too.

"The Make-A-Wish Foundation grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. Based in Phoenix, the Foundation is one of the world’s leading children’s charities, serving children in every community in the United States and its territories. With the help of generous donors and more than 25,000 volunteers, the Make-A-Wish Foundation grants a wish every 38 minutes. It has granted more than 212,000 wishes in the United States since its inception in 1980. Visit the Make-A-Wish Foundation at wish.org and discover how you can share the power of a wish."

Macy's 5th Annual "National Believe Day"

MACY’S LOCATIONS ACROSS THE COUNTRY!

Date: December 14, 2012

Time: All Day

Friday, December 14, 2012 is National Believe Day! On this special day, children across the country with life-threatening medical conditions will be granted wishes at their local Macy’s store. You can join in on the magic that makes these wishes possible by visiting your local Macy’s store and dropping off a letter to Santa at the Macy’s Santa Mail Letterbox. On this special day, for every letter received, an additional $1 will be donated to Make-A-Wish up to $500,000. To find out more about Macy’s Believe campaign, visit www.macys.com/believe today!

Little Elves at the Festival

This morning, we took the kids to the Festival of Trees.  They loved it!  On weekdays, Festival opens an hour early for people with disabilities.  We were able to easily navigate Bertrand's wheelchair among the aisles, he had an unobstructed view, and he was able to enjoy many of the trees and bright lights before the doors opened to the public at 10am.

Once the crowds came in, the expo hall got too loud, so Bertrand closed his eyes and shut down.  His sensory issues aren't as bad as they once were, but he can still get overwhelmed.  He wasn't the only one.  Once the hall got really loud and busy, Victoria began to meltdown, and we had to leave.  Still, it was a wonderful morning to spend with family and friends.  :)

The Festival of Trees runs through tomorrow at 10 PM.  If you get a chance to go, it's great!

The kids' favorite tree.

The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals

Where: Barcelona, Spain
When: on 1 September 2013
Website: http://www.iciem2013.com/

The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals as a part of the programme of the 12th International Congress of Inborn Errors of Metabolism.

The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals will bring together the healthcare professionals who study the scientific and medical aspects of this growing family of diseases, and the patients with their families. “This conference is particularly important” said Vanessa Ferreira, sister to an affected patient. “Advances in technology are going to have a profound impact on the CDG field, causing a rapid growth of our knowledge on the types of CDG and on the variability of their clinical spectrum”.

The conference will cover topics relevant to a better understanding of these rare diseases by the affected families. There will be state-of-the-art presentations on clinical care, on biochemical and genetic diagnosis of CDG, on therapeutic approaches, on animal models and on current supportive therapies.

Several leading healthcare professionals will participate. Professor Jaak Jaeken, will deliver a keynote speech about the main aspects of CDG knowledge acquired in the past, with messages for the future.

This unique conference promises to motivate, educate and promote sharing and participation, built on the success of previous conferences organized by the Portuguese Association for CDG and other rare Metabolic Diseases (APCDG-DMR).

“The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals: a booming story of sugar trees” “aims to share experience and to unite families from different regions and countries. In addition, this conference will be the first in which several CDG patient representatives and professionals from all over the world will be involved in the organization and coordination of the conference”. said Vanessa Ferreira.

The organization encourages experts on metabolic diseases to attend, especially those that have families affected by CDG. There are oral communications on 6 themes, designed to foster reflection and discussion amongst CDG families and professionals.

************************

We're very excited!  Hopefully, at least Matthew and I will be able to attend this conference!

Festival of Trees 2012

It's that time of year again! I am selling discount tickets for the Festival of Trees to benefit Primary Children's Medical Center. Tickets are $4.00/adult, $2.50/child. Children 2-years-old and under are free.  (Each ticket costs about a dollar more at the door.)

The Festival will run Wednesday, November 28 - Saturday, December 1, 2012 from 10:00 a.m. to 10:00 p.m. daily at the South Towne Exposition Center, 9575 South State Street, Sandy, Utah 84070.

PLEASE LET ME KNOW IF YOU WANT DISCOUNT TICKETS!

Primary Children's Medical Center is the children's hospital for Utah, Idaho, Wyoming, Nevada, and Montana. It is equipped to treat children with complex illness and injury, and is recognized as one of the top children's hospitals in the United States. Primary Children's is the pediatric specialty teaching hospital for the University of Utah School of Medicine.

For 42 years, the Festival of Trees has been a “Gift of Love” to children at Primary Children's Medical Center. Over $30.8 million has been raised for children at Primary Children’s Medical Center through the Festival since 1971, with $1,655,931.40 raised in 2011.

TREES: More than 700 decorated Christmas trees of every size, shape, variety, and theme.

AISLE OF WREATHS: Wreaths, mantel decorations, and outdoor display items.

SWEET SHOPPE: Holiday confections including fudge, divinity, pecan rolls, chocolates, caramel apples, and a variety of baked goods.

SMALL FRY: A shop designed for kids of all ages! Warm bread, cotton candy, lollipops, toys, and gifts.

GINGERBREAD VILLAGE: Wonderful creations from cottages to castles!

CENTERPIECES AND COLLECTIBLES: Centerpieces, collectibles, table decorations, and artwork.

QUILT BLOCK: Beautifully made quilts in a variety of patterns, colors, and sizes.

PLAYHOUSE PLAZA: Child-sized dream houses, gazebos, dollhouses, and children's furniture.

HOT SCONES AND SWEET ROLLS: Delicious hot scones and sweet rolls.

SANTA LAND: A visit and photo with Santa.

KIDS KORNER: Face painting, bubble machine, and other fun activities for children.

ENTERTAINMENT: Singers, dancers, and instrumentalists entertain each day from 10:15 a.m. until 10:00 p.m.

FRIENDSHIP CARDS: Purchase handmade cards as a tribute to someone special.

GIFT BOUTIQUE: A shop of handcrafted treasures such as quilts, toys, baby gifts, jewelry, Christmas decor, handmade cards, and much more!

Get Seizure Smart! Educational Conference

This Saturday, join the Epilepsy Association of Utah for the FREE 10th Annual Get Seizure Smart! Educational Conference.

Saturday, November 3rd, 2012
9am to 1pm
University of Utah
Clinical Nuerosciences Center
Auditorium Level
175 North Medical Drive
Salt Lake City, UT 84132
Topics Covered:

• Epilepsy 101 
• Latest Research and Development 
• Treatment Options 
• Art and the Brain Connection

ARTILEPSY: Visualizing Hope

The Epilepsy Association of Utah and the University of Utah Clinical Neurosciences Center present ARTILEPSY, an exhibition of original artwork, photography and home crafts by people of all ages living with Epilepsy. This evening illustrates the profound effect that epilepsy can have on human life and the courage, humor and imagination many show in facing it.

Entries due FRIDAY October 26th!

Exhibit Open November 2 - 30th.

RARE Patient Advocacy Summit Simulcast

We'll be tuning in to watch this year's RARE Patient Advocacy Summit with the hope we can attend next year! Below is a message from the Global Genes Project.

In conjunction with the first annual RARE Tribute to Champions of Hope Gala, Global Genes | R.A.R.E Project will hold a Patient Advocacy Summit on September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort in Newport Beach. Patient advocates will engage, learn, and discuss a variety of topics that directly affect them leading to collaborations that will benefit the entire rare community.

Although this event is currently full, you may register to watch the summit simulcast live via the web or later at your convenience. If you would like to join us, please register at www.globalgenes.org/pass-form in order to receive the simulcast link.

Thank you and we hope you can join us and watch the simulcast!

The RARE Team

Streaming video by Ustream

Dine at IHOP for the Epilepsy Association of Utah

You know, some days, eating is just eating. Then there are the meals spent at IHOP. On those special days devouring at IHOP, why not help The Epilepsy Association of Utah (EAU)?

From 5:00 pm to 9:00 pm on September 26th, particpating IHOPs along the Wasatch Front will donate 20% of their qualifiying sales to help the 100,000 people in Utah living with Epilepsy.

Just bring in a copy of the flyer (Download it here)

to one of the following IHOP Restaurants and the EAU will get 20% of the total cost of your meal! Now that's a meal with a purpose.

This September 26th from 5:00pm - 9:00pm IHOP will donate 20% of their sales to The Epilepsy Association of Utah. All you have to do is print out the flyer to the right, take it in to one of the Participating Restaurants, present it to your server when you order your meal with a beverage and IHOP will send us a check for 20% or your total bill. How cool is that? Help us, while enjoying a meal with family and friends!

When: 
September 26th, 2012
5:00pm to 9:00pm

Where: 

IHOP Ogden
189 12th Street
(801) 621-7000

IHOP Layton
920 North Main Street
(801) 593-0433

IHOP Riverdale
947 West Riverdale Road
(801) 392-4467

IHOP Centerville
388 North Market Place Drive
(801) 296-8000

IHOP Sandy
10815 South State Street
(801) 523-8613

2012 Conference on Rare Diseases and Orphan Products

U.S. Conference on Rare Diseases and Orphan Products

Register By October 1 For Early Bird Rate!

Join patient advocates, drug and device industry leaders, researchers, government partners and investors at this major conference to address together "Shaping the Future Now" for rare diseases and orphan products.  Sponsored by NORD and DIA, with major input from FDA and NIH, this event will include general and breakout sessions with three themes:  policy, research and regulation, and special challenges.
The 2nd annual U.S. Conference on Rare Diseases and Orphan Products will take place October 22-24 in Washington DC. Everyone is welcome, and the program should be of particular interest to:

• Researchers from academia and drug and device companies
• Patient organizations and those interested in creating one
• Senior managers from drug and device companies interested in rare diseases
• Investors focused on the future of orphan product development
• Policy experts who are concerned about federal or state policies that affect patients with rare diseases
• Providers of services to the rare disease community, including insurance providers and healthcare professionals
• Government officials responsible for rare disease research and orphan product oversight

Online Registration Is Open Now!

A full description of the conference and online registration are available now.  Register by October 1 for the Early Bird rate.  Topics and speakers will include:

• Impact of FDASIA on Orphan Product Development (Andrew J. Emmett, MPH, Managing Director, Science and Regulatory Affairs, BIO; Cassie A. Scherer, JD, Policy Advisor, Office of the Center Director, CDRH, FDA)
• Investing in Orphan Products: Is the Environment Getting Better or Worse? (session chaired by Thomas M. Burton, JD, Staff Reporter, The Wall Street Journal)
• Special Challenges in Rare Diseases (John J. Castellani, President & CEO, PhRMA)
• Well-Designed & Well-Conducted Clinical Trials (session chaired by Gayatri Rao, JD, MD, Director, FDA Office of Orphan Products Development)
• The New Relationship With the Patient Community (session chaired by Jayne C. Gershkowitz, Senior Director, Patient Advocacy & Public Policy, Amicus Therapeutics)
• TRND and Translational Development (Christopher P. Austin, MD, Scientific Director, NIH Center for Translational Therapeutics, National Center for Advancing Translational Sciences)
• Endpoint Development (session chaired by Anne R. Pariser, MD, Associate Director for Rare Diseases, Office of New Drugs, CDER, FDA)
• Facing the Crisis in Biomedical Innovation: A Venture Investor's Perspective (Jonathan S. Leff, MBA, Managing Director, Warburg Pincus)
• Research and Regulation (Robert M. Califf, MD, MACC, Vice Chancellor for Clinical and Tanslational Medicine; Director, Duke Translational Medicine Institute; Duke University School of Medicine)

At a Critical Moment in Time: Bringing All Stakeholders Together

With a major new law (the FDA Safety and Innovative Act) soon to be implemented, this forward-looking conference brings together all stakeholders to "Shape the Future Now" for rare diseases and orphan products.
The conference is co-sponsored by the National Organization for Rare Disorders (NORD), the voice of 30 million Americans with rare diseases, and the Drug Information Association (DIA), a neutral, nonprofit, global professional association for those working in discovery, development and management of pharmaceuticals, medical devices and related products.
Collaborators include Duke University School of Medicine, EURORDIS (Rare Diseases Europe), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).

Parent Education Night: Alternative Medical Treatments for Seizures

Pediatric Neurology Parent Education Night: 
Alternative Medical Treatments for Seizures

Thursday, October 11th at 6:00 pm

Primary Children's Medical Center Auditorium - 3rd Floor

Parents are invited to participate in a question-and-answer format presentation about seizures. Topics may include diagnosis, disorders, prevalence, medication and others. This is a chance to ask any questions you may have and to meet other parents who have children with seizures.

Discussion Lead by a Panel of Experts:

• Matthew Sweney, MD
• Francis Filloux, MD
• Paula Peterson, RN, MS, PNP
• Eliza Hamilton, RD, CD
• Kim Orton, RN
• Parent Advocate Marin Bywater, LCSW

Sponsered by the University of Utah Pediatric Neurology Division and Medical Home Demonstration Project as part of a quarterly education night series.

Purplelicious Pageant

Did I really just enter Bertrand and Victoria in a pageant?!  Yes, yes, I did.  (Eep!)  But this is not your typical pageant!  The "Purpleliciuos Pageant" is both an event for epilepsy awareness and a fundraiser for epilepsy research.  Tickets are $5 in advance and $7 at the door.  Come watch Victoria destroy the stage and Bertrand win the "Best Hair" category.  ;)

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 Epilepsy Awareness Pageant is for you! Application deadline moved to August 3rd. 

What:   Purplelicious Epilepsy Awareness Pageant 

When:   September 15, 2012 (DATE CHANGED!) 

Where: Best Western Cotton Tree Inn in 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! 

Visit Purplelicious Pageant Application to download your application today!