As Autumn Approaches: Fall Into Epilepsy Awareness!

The days are growing shorter, the nights longer, the air is getting cooler, and the leaves are changing colors.  All of this indicates that we getting into the season of autumn.  As it approaches, we must remember first that November is Epilepsy Awareness Month.  A time to wear your purple proudly to promote Epilepsy Awareness as well as support any friends, family, or loved ones who deal with the effects of Epilepsy, or any other type of seizure disorder/syndrome.

Just wanted to let you know what events are coming up, within the next 30 days, to promote, celebrate, and be educated about Epilepsy Awareness.  Here is the run down, in order of appearance.

October 20th & 21st - UEA (Utah Education Association) Convention and Education Exposition

• at the South Towne Exposition Center in Sandy.
• the largest professional conference for educators in Utah
• provides dozens of professional development workshops for K-12 educators
• keynote speakers
• a New Educators’ Workshop
• the Idea Fair
• hundreds of vendor booths, including the Epilepsy Association of Utah!
• promoting awareness of Epilepsy to teachers, which will enable them with...
• knowledge of how to deal with seizures in the classroom 
• ability to discourage oppressive and stigmatizing comments made by classmates
• so other students can get seizure smart as well!
• ability to give rescue medication for long-lasting seizures
• knowledge of awareness activities, events, and conferences

October 22nd - Halloween Carnival, called Whispers in the Park 
The Annual Halloween Carnival is an awareness and fundraising campaign, held in October, to celebrate the Spirit of All Hallows Eve. Halloween is a time of celebration and superstition. Of shorter days and longer nights, of roaming between life and death. It's a time when we shed who we are and become the playful, frightening things we have always wanted to become. With gentle whispers, the Epilepsy Association of Utah is taking the superstition and mysticism out of living with Epilepsy and putting those things where they belong: Halloween.

• at West Jordan Memorial Park
• from 11:00 am to 8:00 pm
• Raffles
• Vendors
• Live Performers
• Battle of the Rockbands (the game!)
• Cake Decorating
• Costume Contest
• Games & Activities
• Photos
• and MORE!

November 3rd  - Artilepsy: Visualizing Hope

•  Free Art Galleryby people of all ages who are affected by Epilepsy.  
• With statistics of 1 in 26 people developing Epilepsy, we are all affected by it, so there is no reason to not enter in your creation, no matter the media type.  :D
• Entries due October 22nd
• Many Mediums
• computer assisted graphics
• creative arts (home crafts)
• fine arts (paint, pencil, watercolor, oils, etc) 
• music composition
• photography 
• Be sure to read through the description on the facebook page to access the entry forms and other deatils.  (Link to facebook is above.) 

 November 4th - Night Among the Stars Gala
Come and celebrate a black tie evening and dinner to help Utahn's dealing with epilepsy. Dinner will be held at Noah's in South Jordan, Utah. Tickets are available for $100/plate or $700 per table of eight. We will be also selling gold and silver dedication stars for $10 and $24 each which will hang at the gala. Let a loved one know you think they are a star!  Click on the link above to register.

November 5th - Seizure Smart Education Conference.
This is a great opportunity to come and meet with a few neurologists and find new information from the medical community. It is also a great place to get outside references. We will have the privilege of hearing from Glenn Fenster. Glenn has bicycled six times across the United States to raise awareness for epilepsy on behalf of his son and all those affected by epilepsy. 

• at the U of U Neuroscience Building
• 9:00 am to 1:00 pm
• FREE to attend 
• get seizure smart
• workshops/classes to educate yourself and others about Epilepsy. 
•  including a breakout session with Holly E. Ferrin about dealing with the social stigma and oppressive forces of Epilepsy.   

 We've got a busy autumn coming up, but with all the activities and events we have coming up, I am sure that it will be easy to "Fall into Epilepsy Awarenss!"


 Be sure to follow us on Facebook & Twitter for live updates!  



Thanks everyone, for your continued support!

Camp Video!

Yes, here it is, the video for Camp Spike and Wave 2011.  If you were there, comment with your favorite moment.   And if you weren't there, comment with some things that look exciting.  Can't wait to see you next year! 

See more posts about Camp from 2011!
Day 1
Day 2
Day 3

Coming Soon!  The Camp Spike and Wave book from 2011

contact Holly for any questions about Camp, photos, video, book, or registration! 
holly@epilepsyut.org

Thanks for your support!

Laser Ablation - Epilepsy freedom for patients?

Although this procedure will not help everyone, as many as 35% of people with Epilepsy can be helped and sometimes cured. Talk to your Doctor about it today!



Columbia University researchers state that "An estimated 1 in 26 Americans will develop epilepsy in their lifetime, a risk that translates to about 12 million people in the United States", a number that is much higher than the CDC reports.

Camp Spike & Wave - Day 3

Another great day! (and a later night!)
The high ropes course is definitely a camp highlight!
Horse riding is wonderful.  Can we get ponies when we come home?
Smores - a great way to end a fun day!

Climbing the cargo net

What a great view!

Gimme 5!

Working together

Keep your balance!

New recruits?

More balancing acts

Giddyup!

Hey cowby!

Camp Spike & Wave - Day 2

Ah, the fun has begun!

We started out our day in a great way - climbing the rock wall.  The kids are quite the squirrels - many made it all the way to the top to ding the bell - 32 feet up!  Cycling was on the schedule as well today.  No, we didn't just ride regular old two-wheel bikes.  We got to try out adaptive bikes - so cool!  Crafts, you bet!  We made bottle cap necklaces, I-Spy bottles, and tie-dyed t-shirts.  The Lynch family came up to volunteer for the day.  We played a great game of Sardines with them and had fun with them at the pool.  Their fundraiser, Laps for Lyndsay, helped with camp tuition this year.  Thanks, Lynches!  We ended the day at the Kamas Rec Center pool.  Do we have to get out???

Biking - the good life!

Tie-dying - not as messy as you'd think!

What a great way to cool off!

Waiting our turns and planning out our routes to the top!

Blindfolded?  Piece of cake!

Easy does it!

Biking

The Lynch Family

The gang's all here!

Camp Spike & Wave - Day 1

Well, we're here!  We got a taste of the fun we're going to have - and now we're ready to have fun tomorrow, Friday, and Saturday!
Dinner from Madeline's was great - thanks!
"Flight of the Navigator" was the feature of movie night - check it out!

Checking out the campus.  Look at that ropes course we'll be on by the end of the week!

Visiting with the horses.

Telling stories.

More story telling.

Upsher-Smith Laboratories Begins Phase III Study Of Intranasal Midazolam For Rescue Treatment Of Seizure Clusters In Epilepsy Patients

Upsher-Smith Laboratories, Inc. announced the initiation of a Phase III clinical trial to evaluate the safety and efficacy of USL261, an investigational intranasal midazolam, for the rescue treatment of seizures in patients on stable anti-epileptic drug (AED) regimens who require control of intermittent bouts of increased seizure activity, frequently referred to as seizure clusters. USL261 has been granted orphan drug designation for this use by the Food and Drug Administration (FDA).

Upsher-Smith Laboratories Begins Phase III Study Of Intranasal Midazolam For Rescue Treatment Of Seizure Clusters In Epilepsy Patients

Greater seizure frequency seen in women with epilepsy during anovulatory cycle

Greater seizure frequency seen in women with epilepsy during anovulatory cycle

SUDEP- What it is and what you can do.

Thanks to our friends at SUDEP Aware.

Medical News: Risk of Epilepsy Measured, May Be Still Higher - in Neurology, Seizures from MedPage Today

This research was originally concluded and published late last year. In researching the topic, we could not find ONE major news outlet that had reported on this study. The study concluded that 1 in 26 may still be an under estimate due to the fact that the United States currently has no reporting system for incidences involving Seizures and Epilepsy. As it stands, using this data, the incidence of Epilepsy in the United States is raised from 3 Million to 12 Million, with Men having a slightly higher chance of developing Epilepsy: 1 in 21.

Medical News: Risk of Epilepsy Measured, May Be Still Higher - in Neurology, Seizures from MedPage Today

Come One Come All... To Our Ribbon Cutting!

Copy of Official Inviation

FOR IMMEDIATE RELEASE:

Epilepsy Association of Utah Announces Office Relocation

West Jordan Mayor to attend Ribbon Cutting Ceremony

West Jordan, UT - June 13, 2011 - The Epilepsy Association of Utah today announced it has relocated it's primary offices to a newer space within West Jordan City.  “The new office space is more open and inviting”, said Kris Hansen, President of The Association. “We needed a better space to host member events and receive guest, this new space provides that opportunity”.  To commemorate the move, the West Jordan Chamber of Commerce is hosting a Ribbon Cutting event in their honor.

When: Friday, June 16th

Open House: 11-2

Ribbon Cutting: 11:30

Where: 8539 S. Redwood Rd. #B

West Jordan, UT 84088

Phone: (801) 566-5949

About the EAU

The Epilepsy Association of Utah was founded in 1973, and is the only 501(c)(3) epilepsy charity in Utah. New statistics conclude that 1 in every 26 people are affected with epilepsy at some time in their lives. Epilepsy is a disorder with a variety of causes and may also be considered a seizure disorder. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. The EAU sponsors a teen camp, awareness, education, support groups, advocacy, college scholarships, art exhibits, educational conferences and much more. The EAU is dedicated to enhancing the quality of life for all individuals living with epilepsy and seizure disorders.

About the West Jordan Chamber of Commerce

The West Jordan Chamber of Commerce is an association of business in West Jordan united together to advocate commercial and civic interests. The Chamber is a business avenue for networking and promotions; an educational resource for business leaders; and a catalyst in strengthening and creating a strong business environment. The Chamber represents all businesses and is committed to providing tools and removing barriers to ensure an environment for your business to succeed and grow. Our mission statement is “To foster a positive relationship between business, city and community, to build a profitable business atmosphere.” 

~*~ 

We really hope to see you there!!!

 

Destiny Maker Annual Bike Ride

Glenn Fenster, Destiny Maker, is currently involved in his annual cycling tour across North America raising awareness about Epilepsy. Glenn is one seriously dedicated father and Destiny Maker..

This may be the first time you have heard about him so, please take a moment to see what he has been up to and all the great work he has been doing. Information about his journey is available in the following places.

Glenn's Blog : http://glennsjourney.xanga.com/
Glenn's Twitter: search "@destinymaker4u"
Glenn's Website: http://www.destinymakerevents.com/

If you saw on his blog, Glenn posted:

"Good morning, of what I hope will be one final full day in Colorado. Really looking forward to getting to Utah where I know the Epilepsy [Association] of Utah and others will be helping me. Of all the affiliates, they are the ONLY ONE to really keep in touch, see what I might need, offer assistance such as cooking meals, and meeting support groups."

If you have anything to contribute, such as assistance with food, bike repairs, or just some emotional encouragement please let us know (via email, text, or FB message) if you would like to be there.

We know it's short notice (this years weather has slowed Glenn down) but according to his schedule he should be in SLC on Friday or Saturday (more likely Saturday). We need to make sure that this amazing guy is supported when he comes into Utah. We will update the blog and other social media outlets when we know for sure where he will be staying and where we can meet him.

He deserves to be cheered on for the work he is doing and it would be a great opportunity to hear what he has to say about raising Epilepsy awareness. Again, If you have anything to contribute, such as assistance with food, bike repairs, or just some good encouragement please let us know (via email, text, or FB message) if you would like to be there. Thank you.

Email Holly: holly@epilepsyut.org
Or send a facebook message!

Topomax Recall

Do you take Topomax? Ortho-McNeil Neurologics Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., announced yesterday that it is voluntarily recalling two lots of TOPAMAX® (topiramate) 100mg Tablets.

The lots in question were shipped 10/19/2010 and 12/28/2010 and distributed in the U.S. and Puerto Rico.

The recall was posted as a direct result of finding trace amounts of TBA in the tablets. TBA is a byproduct of chemical preservative commonly used on shipping pallets.

Read more about it here:
http://www.fda.gov/Safety/Recalls/ucm251515.htm

GSK and Valeant’s epilepsy treatment approved | InPharm

GSK and Valeant’s epilepsy treatment approved | InPharm

Midvale Elementary Purple Day

Purple Day at Midvale Elementary was incredibly fun! Princess Amerah came and talked to the kids about her story of accepting yourself.  She also talked about her brother who has seizures. Thank you to Cari who arranged this and to Princess Amerah for sharing your Purple Day Story!

Stopping Seizures, Curing Epilepsy | abc30.com

Stopping Seizures, Curing Epilepsy | abc30.com

Purple Day Balloon Launch!

For immediate release

PURPLE DAY BALLON LAUNCH SCHEDULED

Salt Lake City,Utah - March 19, 2011

In 2008, a 9-year old from Nova Scotia, Canada had an idea. Ideas are not uncommon in 9-year olds; however, this particular one affected 50 million people worldwide. Cassidy Megan was motivated to create Purple Day from her own experiences with Epilepsy. Cassidy and her family set out to encourage people to talk about Epilepsy, to accept people who live with Epilepsy and to send a message to people with Epilepsy- they do not need to hide.

On March 26th, the Epilepsy Association of Utah, in coordination with The Utah Parent's Center, will celebrate the lives of all 50,000 people in Utah who have Epilepsy by launching purple balloons; tied with the hopes, dreams and memories of everyone affected.

Please join us at Murray High School immediately following the Family Links Conference in sending the message that Epilepsy is no longer ‘sacred’, it is accepted.

When: March 26th, 2011 @ 4:00pm
Where: Murray High School
5440 South State Street
Murray, Utah

About Purple Day
Purple Day is an international grassroots effort dedicated to increasing awareness about Epilepsy. Every year on March 26th, people in countries around the world are invited to wear purple and host events in support of Epilepsy awareness. In 2010, people in dozens of countries worldwide participated in Purple Day. With your participation, Purple Day 2011 will grow to be even bigger!


About The Epilepsy Association of Utah
The Epilepsy Association of Utah provides awareness, education, support services and advocacy for and in behalf of all those dealing with the many challenges of Epilepsy/seizure disorders.


About The Utah Parent Center
The Utah Parent Center is an award-winning, non-profit organization founded in 1984 by parents of children and youth with disabilities to help other parents facing similar challenges throughout Utah.

Let's Talk Epilepsy!

For those who have epilepsy, and/or for those who are friends and loved ones who want to learn more about epilepsy and how it affects those they care for.

Purple Day (Epilepsy Awareness Day) is coming up fast (March 26), and what a great way to celebrate the day by learming more about epilepsy from among the top Epileptologists.

On Wednesday, March 16, 2011, Dr. Pegah Afra (see link below) will be giving a 20-25 minute presentation about Epilepsy, medications for controlling it, and other related issues. She will also be taking questions from the audiance, so this would be a great time to ask that question you've got on you mind.

Dr. Afra's Details,
http://healthcare.utah.edu/fad/mddetail.php?physicianID=FM00010263

Salt Lake Public Library's Website
http://www.slcpl.lib.ut.us/index.jsp

Epilepsy Association of Utah's Website
http://epilepsyut.org/

FDA Accepts Lundbeck Inc. Submission Of New Drug Application For Clobazam

FDA Accepts Lundbeck Inc. Submission Of New Drug Application For Clobazam

Today In America: Medical Device, Emfit for Seizure alert

Stacy Julian is Coming to Crop Because You Care!

I said it once, I'll say it again, Stacy Julian is coming to Crop Because You Care as our special guest!

Stacy's Updated Bio:

Stacy Julian is a recognized leader in the scrapbooking industry and the visionary founder of Big Picture Scrapbooking (BPS). Launched in November 2005, BPS is the first dedicated online scrapbooking education program with members around the world. Offering a wide range of convenient on-demand projects and progressive multi-week courses, what differentiates BPS is Julian's liberating philosophy and simple step-by-step thematic approach that unlocks a person's creativity and helps them to easily create stories out of life's special moments.

A passionate and sought-after speaker, trainer and author, Julian regularly presents across the nation and abroad, including Japan, Australia and Europe. Author of four books, her recent title Photo Freedom is sold at local craft stores, Creating Keepsakes.com and Amazon.com. She also has a popular blog and strong Twitter following. Her television appearances include the Discovery Channel's Home Matters and the PBS series More than Memories. Simple Scrapbooks Magazine, where Julian was the founding editor, has been mentioned in The Chicago Tribune and Woman's Day as a leading consumer publication for the scrapbooking industry.
Julian holds a Bachelor of Science degree from Brigham Young University. A certified professional teacher with the Craft and Hobby Association since 1997, Julian lives in Spokane, Washington and is a proud wife and energetic mother of five.

So, to put it shortly, she is one amazing woman!

Want to know more?

• Her website is a great resource as well as the Big Picture website. There you can find self-paced projects, workshops and free classes - it is all online! This is great for the busy scrapbooker.
• Not only is Stacy on Twitter, but she is also on Facebook as well, so it is easy to keep up with what she is up to and what creative ideas she has to share.
• As you read above, Stacy has published four books, they are The Big Picture, Make a Baby Scrapbook, Simple Scrapbooks, and of course, Photo Freedom.
• Stacy has gotten involved with an awesome type of cardstock, called Core'dinations, color core cardstock. She has a 20 page stack of cardstock called Happy Colors. It's an exclusive collection of Stacy Julian designs embossed on Core’dinations, the only sandable ColorCore Cardstock. Individual sheets are also available.

Whew! That's a ton of stuff! The Epilepsy Association of Utah is so lucky to have her come to this year's Crop Because You Care as our special guest! Did you know? She also has come to CBYC 5 times as our special speaker and is a HUGE CBYC fan she has helped sponsor CBYC 8 times!

It is only $25 to come and crop the day away with friends, family, be involved with classes, games, prizes and be able to see Stacy Julian on a more-personal level. And all of this is for a great cause.

Proceeds of the Crop Because You Care, goes to supporting the differing services the EAU offers to people directly and indirectly affected by epilepsy, such as...

• ESS (Epilepsy Seizures & Safety) Program: We provide trained speakers for community presentations to educate the public and help them understand more about epilepsy and it's effects.

• Support Groups: Provided in Logan, Vernal, Saint George, Sandy, Salt Lake and a Parents group in Draper.

• Camp Spike and Wave: This is a week long summer camp provided to teenagers 10 - 18 that are dealing with epilepsy.

• Annual Conference: Held every November this program includes speaker's who are experts in the field of epilepsy.

• Referral Service: Given to a variety of organizations that can provide other needed assistance.

• Informational Library: Containing brochures, books, videos and other literature relating to epilepsy.

So, all in all, it's going to be a day of education, crafting, and of course, fun!

As Stacy Julian said, "We scrapbook to live life twice."


Can't wait to see you there!

Crop Because You Care

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 10th 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 February 26, 2011 at the South Town 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 Kris at kris@epilepsyut.org. For more information regarding sponsorship and donations (as well as a lot of other information) you can visit the Crop web-page within the epilepsyut.org website.