March 2016 NEWSLETTER
Serving Northern California from Fresno to Monterey to the Oregon border
In This Issue
Website Quick Links

Paul E. Smith Scholarship

and 
Frankie Lee Forbes Scholarship

More info here
Meet Priscilla
Social Media Intern

Priscilla was diagnosed with epilepsy at the age of 15. She experienced different emotional stages after being diagnosed- confusion, loneliness, and
depression. With the help of her family and school she was able to overcome those feelings and become determined to lead a successful life. Priscilla is now two years seizure-free.

Priscilla is a senior at San Francisco State University studying journalism. She has chosen to intern at EFNC to help improve her social media outreach, marketing experience, to help bring awareness to epilepsy, and to help her pursue a career in nonprofit organizations.

Priscilla has a strong support system which includes her family and friends. She enjoys finding new places to eat, writing, spending time with her loved ones, and singing like no one is listening.
New! M ission Statement 
"To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives."
Thank You
2016 Stroll Sponsors

Marathon

Sprinter

Stroller
 


MyEpilepsyTeam is a social network and online support group for people who are living with epilepsy.
#DareTo Educate
FREE Seizure First Aid Training Available

415.677.4011
Very Special Thanks
2015 Gala Sponsors

Title


Platinum
Green Charitable Foundation
Remick Family Foundation

Gold

Silver
Anonymous
Jim Anderson
Edward Chang M.D.
Falasco
- Keeney  Family
Youker Consulting Group
Epilepsy Center of Excellence

Benefactor
Bronte Epilepsy Research Foundation
Sande Schlumberger & Roxane Schlumberger-Hume
Barbara Suskind &
Lowell Richards
Richard Thalheimer
Brad and Rebekah Triebsch

In-Kind
Jones Family Vineyards

NEW! Epilepsy iConnect At Home
It's Your Lucky Day--You're Invited!

You are invited to attend an on-line live discussion about anti-seizure medicines with Dr. Robert Fisher, Director of the Stanford Epilepsy Center and former Editor-in-Chief of epilepsy.com. Join the meeting with a computer, tablet or Smart Phone by clicking on the link below on 
Saturday,  April 9th, at 11 a.m.

https://global.gotomeeting.com/join/471864645

You can listen, watch, type questions/comments, and/or talk in the group's discussion with a microphone on your computer, or by calling in via telephone:  +1 (312) 757-3121, Access Code: 471-864-645.
  Access codes are only good for the 4/9/2016 session.

The session will consist of a 15-20-minute presentation by Dr. Fisher, followed by interactive sharing of your own experiences using seizure medicines.

Call is limited to the first 100 people who connect. Programs on different topics will take place every month--stay tuned! Other topics will be developed according to interest but may include:
Epilepsy 101: What is a seizure? What is epilepsy? What causes epilepsy? What are the different types of seizures (videos)? How does a doctor diagnose epilepsy? What can be learned from an EEG, an MRI? What are refractory seizures? And lots more!
FUN, FUN, FUN
Basketball! Stroll! Coelho Camp!

 

April 16, 2016, Sacramento, CA

April 17, 2016, Atherton, CA

  • A fun half-day camp to empower kids with epilepsy and to inspire them to reach for the stars. Sibling or friend welcome to join! 
Team Forever Green



STROLL: 24th Annual!

May 21, 2016

Six Flags Discovery Kingdom, Vallejo 
 

  • Start a team! Gather members! Spread the Word!


COELHO EPILEPSY YOUTH SUMMER CAMP

June 26-July 1, 2016

CYO Camp, Occidental, CA 

  • Reunite and make new friends! Enjoy a sleepover camping experience that helps develop self-esteem by promoting self-confidence.   

Veterans and Epilepsy
Traumatic Brain Injury

The VA Epilepsy Centers of Excellence (ECoE) video series "Veterans and Epilepsy: Basic Training" addresses the stigma of epilepsy and educates Veterans, their caregivers, and the general public about living with epilepsy.  Each video in the series features a Veteran sharing his or her personal experiences and unique challenges balancing the medical, personal and social aspects associated with having recurring seizures.
Click to Watch
 
The  goal of the video   series is to promote public awareness of the impact of epilepsy in the lives of Veterans and to convey that these patients are able to live full, productive, and successful lives. The latest video focuses on epilepsy resulting from traumatic brain injury (TBI) and is now available on YouTube . The VA ECoE will release a new video in the "Veterans and Epilepsy: Basic Training" series every few months.  
Rare Epilepsy Network
Hope For Hypothalamic Hamartomas

NEW! Every month the Epilepsy Foundation of Northern California will provide its constituents with information on a Rare Epilepsy. The Rare Epilepsy Network (REN) is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN has established a registry (database) collecting patient or caregiver-reported data in order to better understand the cause, treatment, management and cure of these rare epilepsies.
 


Hope For Hypothalamic Hamartomas
For many families it began as a peculiar giggle or smirk--some as early as birth. Frequently, it wasn't until the kids were toddlers, that parents realized there was something terribly wrong with their child. 

These kids are the 1/200,000 that are diagnosed with a hypothalamic hamartomas--a rare benign tumor-like malformation that can cause treatment-resistant epilepsy, developmental and cognitive deficits, severe learning disabilities, memory challenges, behavioral problems, rage attacks, endocrine disturbances, and central precocious (early) puberty. Typically, the lesion is not detected on an EEG, missed on brain imaging, and misdiagnosed as a gastrointestinal, psychiatric or behavioral condition. Most patients are diagnosed in childhood, but some patients are diagnosed much later.
Patients & Caregivers

For some--surgery, including a newly developed laser, can be curative. Still, not all patients are good surgical candidates, have access to surgery, or have the ideal outcome and therefore have to manage the seizures and side effects for life.

There is Hope! Hope for Hypothalamic Hamartomas is a 501c3 that provides accurate information, education, support and research to families and health care providers. Hope for HH proudly participates in the REN. If you or a loved have HH or another rare epilepsy, please sign up for the REN today.
Volunteer of the Month
Dawn Chez

Dawn Chez, new Telephone Support Group facilitator, has 22 years experience with epilepsy, developmental issues, and medical care offered to patients with epilepsy. Dawn also has an accounting and finance background. After her first daughter was born and found to have epilepsy with developmental delays due to a comorbid autism condition, she has learned to be a patient's mother, advocate, and in addition has led epilepsy parent support groups as an employee for the Epilepsy Foundation of Greater Chicago. She managed a pediatric neurology practice for eight years, has five years' experience in managing and performing ambulatory EEG in children, and has managed a pediatric physical therapy office in Sacramento.

Dawn currently is married to a pediatric epileptologist and they have four daughters ages 21-25, two with epilepsy conditions, the youngest a nursing student, and the eldest a medical student.  Dawn enjoys volunteering for many epilepsy and autism charities, living in beautiful Northern California, reading, and spending time with her husband, children, friends, and her three dogs.

Dawn, thank you for sharing your knowledge, experience, and providing support to constituents in Northern California!