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September 2016 Newsletter 

September 16, 2016



Students with Epilepsy Awareness Month 
 
Have you given your 2016-2017  Seizure Action Plan to your school? If not, now is the time!  Make sure your teachers and peers know what to do if you have a seizure.

It's the start of a new school year and the EFNC wants your school to be "SEIZURE SMART." We provide a free seizure first aid training for school staff and a free online course (3.2 CEUs) for ALL school nurses!  We are here to support your school so that they can better support you!  
Email Katie Kaffka for more information, our program manager at katie@epilepsynorcal.org.

"Every kid is one caring adult away from being a success story." -Joshua Shipp 
Rare Epilepsy Network
Aicardi Syndrome (AS) Foundation 
Aicardi syndrome (AS) occurs almost exclusively in female and the diagnosis tends to be made at the time of seizure onset sometime in the first 6 months of life.  The primary features of AS includeagenesis of the corpus callosum, lesions in the retina called lacunae, and infantile spasms which eventually evolve in to many other seizure types.  Global developmental disabilities and uncontrolled seizures are almost universal, and other common features include scoliosis, feeding and GI issues, and blindness or vision problems. Most individuals affected with AS have moderate to severe developmental and intellectual disability, although some children are on the milder end of the spectrum.  Because the gene for AS has not yet been discovered, the diagnosis is based on clinical presentation, brain imaging and ophthalmology exam. There are currently about 1,000 people with AS in the United States and more than 5,000 worldwide.  The incidence of AS is about 1 in every 80,000 live births.
 
The Aicardi Syndrome Foundation [http://aicardisyndromefoundation.org] is a volunteer-based, non-profit organization dedicated to raising research funds and awareness for Aicardi syndrome. They support research grants and a bi-annual family conference attended by over 100 families each year. The Foundation is also a proud member of the Rare Epilepsy Network (REN), and parents of children with AS may enroll in the registry at https://ren.rti.org.
     
Golf Tournament to benefit Epilepsy Foundation and Hemophilia Foundation
Monday, October 17, 2016
$90 Per Golfer w/ Dinner
$350 Per Foursome w/ Dinner
11 am Putting Contest ($5 Entry)
1:15 pm Shotgun Start
5:30 pm Dinner ($25 Per Person)
Address: Empire Ranch Golf Course
1602 E. Natoma St.
Folsom, CA 95630
For registration contact Kelly at kelly@epilepsynorcal.org 

SAVE THE DATE 
11.19.16

The Candlelight Gala is around the corner. More  information below:
http://www.epilepsynorcal.org/?page_id=1380



Special Thanks
2016 Sponsors:






     

UPCOMING EVENTS

Wellness & Epilepsy: Exercise, Stress Reduction, and Diet
October 8,2016

Candlelight Gala
November 19, 2016

Epilepsy Awareness Month is in November! 
Do you have any stories you'd like to share? Send them to priscilla@epilepsynorcal.org to have them shared on our social media. 
Serving Fresno to Monterey to the Oregon Border

Our mailing address is:
1736 Franklin St, Ste. 450 Oakland, CA 94612
Phone: 
(510)922-8687
E-mail:
efnca@epilepsynorcal.org
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