JUNE 2014 NEWSLETTER
Serving epilepsy patients in Northern California and their families, from Fresno to Monterey to the Oregon border
In This Issue
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Shop Savers!
Berkeley, Dublin, Vacaville
(855) 336-0212
Savers accepts all gently used clothing and housewares.
Donations are tax deductible and benefit 
Epilepsy Foundation of Northern California.
California State Workers are Working for You!

Last week volunteer Charles Kilbourne and I trained 70 employees from the California State Personnel Board and the Human Resource Department. We were joined by volunteer Gary Wilson and EFNC Office Manager, Olivia Salfiti. How did the trainings get scheduled? Nik's mom, Jodi set them up, of course! Jodi wants to make sure her co-workers are educated about epilepsy so she asked us to 'bring in the troops'. Charles, Gary and I conducted our training 'Seizure Recognition and First Aid'. After the formal training we shared about our own experiences with epilepsy and answered questions. As always, several participants know someone who has epilepsy or a seizure disorder. They aren't alone and neither are you! Call to schedule a free training wherever people need to learn: a school, a workplace, your Rotary club, OR...

And, SHHHHH, don't tell: Jodi is planning a Fun Run in Elk Grove for 2015-more news to follow. 
--Katherine Keeney
2014 Pipeline Conference
This three-day event explored new approaches to epilepsy treatment and care: medication, surgery, devices, medical marijuana, dietary therapies, exercise and wellness. A special thanks to our dedicated volunteers and those who stopped by our table--see you next time!

2014 Shark Tank Winners See complete list
 
All three days of meetings are available online
Thank You Gala Sponsors!
 
Platinum Flame
Lane Auten
The Green Charitable Foundation
Remick Family Foundation
 
Gold Flame
 
Silver Flame
Prakash Arunachalam
Falasco Keeney Family
Joe McGrath
Children's Hospital Oakland
 
Benefactors
Al & Rosanne Clifford

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Campers Have Arrived!
Coelho Epilepsy Youth Summer Camp
June 29-July 4, Occidental, CA
Camp is officially under way! 33 campers arrived Sunday, June 29th ready for fun and an exciting week at camp! Old friends were reunited and new friendships were just beginning. Smiles were seen all around! After check-in, campers headed down to their cabins to get settled and to meet their medical staff and counselors. It's the beginning of a memorable week--let the games begin!
Run Run Run for Nikolas!
 
Nikolas, 11 years old, is a fun, loving, thoughtful and happy boy. At just over a year old, Nik had his first seizure, then two more. At age two, Nik was diagnosed with Generalized Epilepsy. Things were going well until April 2008, when he had his first break-through grand-mal seizure at school. Nikolas was put on a combination of anti-seizure drugs in hopes of controlling his seizures. During this time Nik remained positive and happy. "We remind him that although he has epilepsy, epilepsy does not have him." 
 
Nik is ready for
 Summer Camp!
Fast-forward five years to 2013. Nik had been seizure-free so doctors began weaning him off medications to see if he had outgrown the epilepsy. However, on July 24, 2013, Nikolas had another grand-mal lasting around 20 minutes. For three weeks he had continued seizure activity and endured five ER visits and endless poking and prodding. Due to the complexity of his seizures, Nik was transferred to UCSF. Further testing led to a new treatment plan and now Nik's medications are working. "Through it all, Nikolas has never lost his passion for life."

 

Since Nikolas loves San Francisco and, it was UCSF that took such great care of him, the Ortiz family is raising funds to increase educational awareness in schools and workplaces. Several family members and friends will be running the 2014 San Francisco Marathon July 27, 2014. San Francisco has always been a special place for Nikolas and the very challenging marathon course represents many challenges, similar to the ups and downs of caring for a child with epilepsy. 

To make a gift in honor of Nikolas or someone you love, click here or mail in this donation form.
 
"Run Run Run began when Nik was just a little guy and we took him out to support his aunt running the California International Marathon (CIM), as he saw her come up he cheered "Run Run Run" and so it was born. Join us and pay it forward!"  --Jodi, mother of Nik
Welcome Susannah Cornes, MD
Professional Advisory Board Member

Dr. Susannah Cornes is an Assistant Professor in the Department of Neurology at UCSF. She received her Intensive BS in Psychobiology from Yale University with high honors and her MD from the University of California, San Francisco. She stayed at UCSF for her residency in Neurology, where she served as a chief resident in her final year and then completed a two-year fellowship in Epilepsy. She joined the faculty in 2010 and also completed the Teaching Scholars Program, a faculty development fellowship for medical educators, the same year.
 
Dr. Cornes divides her time between caring for adults with epilepsy, conducting clinical and educational research, and teaching trainees at a variety of levels. She is interested in the role of stress in seizures and epilepsy and serves as a principal investigator for the Stress Management Intervention for Living with Epilepsy (SMILE) trial, a large multicenter trial for adults with epilepsy. She is also a leader in medical education and the principal investigator for a grant-funded study leading to the development of the "NeuroExam Tutor," a mobile platform to teach neurologic examination skills that is being used by students and practitioners across the globe. 

Learn more about S.M.I.L.E -- click here or listen in
Interested?  Contact Stacy Balter 408-315-4243
SAVE THE DATE
Mark Your Calendar!
 
Living With Epilepsy 
Children's Hospital Central California, Madera
Saturday, August 9th
8:30AM-1PM
$5/person--Scholarships available.
Registration coming soon.
 
Topics Include:
  • Epilepsy 101
  • Understanding Pediatric Epilepsy
  • Adults and Epilepsy
  • Medical, Device and Neurosurgical Treatments
  • Patient & Family Panel 
Wait list NOW: 
Be the first to find out when registration is available!
Call: 415-677-4011 Email: efnca@epilepsynorcal.org

Veterans Affairs: Epilepsy & Driving
Free Educational Audio Conference
Wednesday, July 9, 2014
10:00AM-11:00AM PT
 
Dial-in:  1-855-767-1051   
Access Code:  81024195 
 
Presented by: 
Allan Krumholz, MD, Baltimore VAMC
  • To appreciate the history of laws and rules regulating drivers with seizures and epilepsy.
  • To understand the types of state and federal legal regulations for drivers with seizures and epilepsy.
  • To appreciate the risks for crashes for drivers with epilepsy and seizures.
  • To understand physicians' and health care providers' legal responsibilities when caring for drivers with seizures or epilepsy.
NEW Support Groups coming soon! Stay tuned. 
SF Financial District, Fresno, and Yuba City
Epilepsy Foundation of Northern California | 415-677-4011  efnca@epilepsynorcal.org | http://www.epilepsynorcal.org
155 Montgomery Street, Suite 309
San Francisco, CA 94104

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