Dear Friend of the Epilepsy Association of Utah,

Thank you for continued support of the EAU. In order to better serve you we have changed offices 8539 S. Redwood Rd #B. We are going paperless in an effort to better use resources. If you would like to still receive a hard copy of this newsletter email jenn@epilepsy.org

Summer Camp: Spike & Wave

Campers stay in a lodge with comfortable furnishings, including: a twin bed, indoor-plumbing, dresser-drawer for storing clothing and other necessities.While there, the campers get a chance to achieve what they would never believe and still have a fun time. Some activities that campers can participate in are archery, crafts, cycling, horseback riding, rock wall climbing, ropes course challenge, swimming, and much more!

Further information can be found via Facebook, Twitter and on the website for the Epilepsy Association of Utah. The Association's event page contains all of the documents needed to apply for camp. For information regarding tuition and/or scholarship for camp, as well as any other questions or concerns, please feel free to contact Holly Ferrin via email, voice, or text message.
Phone: (801) 931-9629
E-mail: holly@epilepsyut.org

Florida Man Bicycles Across U.S. Meets with EAU
by Annette Maughan

It was a few minutes before an unassuming, unshaven and weathered man approached us in the lobby. I recognized him immediately. Only a man that had ridden across country on the back of bicycle five times, working on his sixth, looks like that. Only a man with an intensely personal mission and dedication to his son, smiles like that.

Glenn Fenster left his 16 year old son at home, in Florida, 57 days ago, to embark on this solo, epic journey bicycling across the United States and Canada. Glenn's mission is simple: tell people about Epilepsy and show them that they can overcome anything.

He first became dedicated to raising awareness when his son, Nyle, was diagnosed with Epilepsy at the age of 2. At that moment, Glenn's organization, Destiny Makers was born and he became a beacon for the Epilepsy Community. Years later, while playing tennis with 10 year old Nyle, his son had a seizure on the court. Glenn rushed to aid him and when Nyle's seizure was over, he reached out to help him up. Nyle pushed his hand away. Glenn said it was a moment forever embedding in his brain: his son didn't need his help. He asked: "How do you keep getting up?" Nyle's response was simple:"I've never seen you stay down"."Right then and there", Glenn said, "I had the idea for the ride".

On this particular day, he stopped in Salt Lake City to rest and meet with The Epilepsy Association of Utah. He told us about his mission this year of 'no strobe around the globe' and explained that he was asking cyclists to not use the strobe setting on their safety lights. He described how the strobe effect can cause seizures in people with Photosensitive Epilepsy and the response he was receiving was remarkably positive. Instead of strobe, cyclists that meet Glenn are committing to use a steady light, their safety is intact and so is that of anyone susceptible to this type of seizure.

Even though Glenn was extremely tired from his trip, he answered every one of our questions and pledged his support. "This", he said, "was his calling." It wasn't work. It was what he needed to do and, "It gets more physically difficult every year." However, we did not see a tired man, weary from his self-imposed burden, we did not see a Tennis Pro struggling to be kind, we saw a genuine, positive person on a mission to tell people that epilepsy is not who you are, it is what you have and you have the strength to prevail.

To help Glenn visit his Facebook page or visit: http://www.destinymakerevents.com

Meet Our Executive Board Members

President - Kris Hansen is a principal contributor to the Epilepsy Community in Utah. She is currently the President of the Epilepsy Association of Utah. Kris volunteers her time to not only the EAU but other charities as well. Kris is the dedicated mother of two children; Kimmie who is 13 and has Dravet Syndrome a rare epilepsy syndrome and Johnny a sweet 9 year old. She brings a new perspectives in how to find strength and enjoyment in caring for our loved ones with disabilities. She has spent the last 12 years as a volunteer for various epilepsy projects such as; Camp Spike and Wave, Crop Because You Care, Artilepsy,Educational Conferences, and much more.

Kris has a an Associates Degree in Floral Design and Business Management. She has started speaking regularly on Seizure First Aid and Managing Caregiver Stress.Her classes come from real life experiences. Her favorite stress quote is: "I try and take one day at a time, but sometimes several days attack me at once."The thing that Kris is the most proud of is being a wife, mother, caregiver and friend.

Vice-President - Annette Maughan, prior to her involvement with Epilepsy Awareness, Annette Maughan worked professionally as a Technology Executive with Bank of America and a System Administrator with The Walt Disney Internet Group. She resigned from Disney to become a work at home Mom to her infant son and started her own Technology Consulting Firm. When her young son was almost three and her infant daughter was 6 months old, the unthinkable happened: her boy had his first grand mal seizure.

From that moment on, Annette became dedicated to finding out about Epilepsy and to ensuring that her son would be accepted for who he is and not shunned for who he is not. She became involved with the Epilepsy Association of Utah in May of 2010 after moving back to Utah to get medical attention for her son. Since that time, Annette has committed herself to raising awareness about Epilepsy and providing support for other families living with the condition.

Secretary - Lindsey Yates-Palmer graduated from Westminster College in 2006 with a degree in English. She has since worked in Business Communications; most recently finishing a Social Media Campaign for the exclusive publisher of Arnold Friberg's artwork. In the summer of 2006, Lindsey decided to focus her efforts in the direct selling industry by becoming an Independent Scentsy Consultant. Before becoming a member of the EAU, Lindsey gave her time working as a freelance writer and advisor; contributing pieces to publications such as: The Myriad and Quarterly West.

Besides her passion for writing, Lindsey enjoys exploring artistic interests such as oil painting, photography and mixed-media arts. Lindsey loves her family with whom she spends all of her free time. She is happily married and plans on becoming a mom within the near future. Lindsey lives by the principle "Give more than you take" which she believes has taken her into every opportunity she's associated with. Her positivity and go-getter attitude is evident during each EAU event.

Treasurer - Bethany Blackham is our new Treasurer and has been volunteering for EAU with Crop Because You Care since it's beginning, and over the 10 yrs has become our Head Chair person over CBYC. She is a stay at home mom of 5 wonderful children and keeps herself busy with baking, babysitting, digital scrapbooking, reading, and volunteering at her children's school. She has a background in banking and is looking forward to the new challenge of keeping the budget straight.

Medical Home Project: Free Parent Education Series
The Medical Home Project is not a physical location, but rather seeks to help coordinate primary care for children with special needs including those with epilepsy. As part of the Medical Home Project and the Neurology Department at Primary Children's Hospital they are offering a series of free parent education nights. Details below.

Free Neurology Parent Education Night Series
Seizures

When: Friday, September 30th at 6 pm

What: Parents are invited to participate in an evening filled with information from a panel of experts: Dr. Fancis Filloux, Dr. Lynn Kerr, Paula Peterson APRN, and parent advocate Marin Bywater LCSW.

Where: Primary Children's Medical Center Auditorium-3rd floor.

Sponsored by the Neurology Department at Primary Children's Hospital and the Medical Home Project.

Next Parent Education Night - January at the Riverton Location

Come Visit Our New Office

We have moved offices to better serve our community and meet our members needs. The grand-opening of our office was held on June 16th and was attended by many members and well wishers. We are located at 8539 S Redwood Rd #B in West Jordan. Please contact Jenn Whiting for more information 801-836-9660.

Thank You to Jill Lang & the Fraternal Order of Eagles

We want to give thanks to some of the great members of our community who watch out for us and who raise awareness on their own. Jill Lang a mother whose son has epilepsy raised over $2000 by asking for pledges as she ran the Salt Lake City Half Marathon in April. This money was used to help teens go to our summer camp and for two partial college scholarships. Thank you Jill for your hard work and dedication.

The Fraternal Order of Eagles, a local service group raised $6000. What a great honor and surprise to have such wonderful people, of their own accord, raise money in behalf of the association. This money will be the start of a prescription fund to help those who cannot afford their epilepsy medications. We are humbled and amazed at the people who of their own accord put their hearts and minds into helping those who are touched daily by epilepsy.

Tips for Heading Back to School

Communicate with your child's teacher(s) before the school year begins. Explain to them what your child's seizures look like and refer to your child's Medical Health Plan. Sadly, teachers may not get these plans when the school year begins.

Offer to talk to your child's class about epilepsy and/or contact us about doing a presentation at your school for faculty and students.

If you child needs a 504 or IEP, research your rights and contact the EAU if you have questions.

Carefully monitor homework and academic progress, while many students with seizures do well academically others may be tired because of medications and interruptions to sleep patterns. These students may need extra time on homework or other accomodations. Some students with epilepsy may also experience learning problems as a result of their seizures.

Watch for signs of bullying or depression.

Have a responsible friend, an older child who can help keep an eye out for your child.