April 2016 NEWSLETTER
Serving Northern California from Fresno to Monterey to the Oregon border
In This Issue
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Learn More
NEW Support Group
Telephone Support Group
Parents & Caregivers of children with epilepsy
Next Meeting: 
May 3, 2016 at 6:00PM

Paul E. Smith Scholarship

and 
Frankie Lee Forbes Scholarship

More info here
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
From the Comfort of Your Home

We are pleased to announce the new Epilepsy iConnect at Home program designed to bring epilepsy education and support to you in the comfort of your home. Working through the platform, GoToMeeting, EFNC is working with Dr. Robert Fisher of Stanford to develop a series of educational presentations which serve as the foundation for our community to come together, learn and share experiences. 
 
Our inaugural program was held on Saturday, April 9th and was a resounding success! Extensive conversations both directly with the physician and amongst-and-between the attendees through the 'chat-platform,' provided a great place for people living with epilepsy to share, exchange and learn. We intend to host this program on a monthly basis and encourage you to watch for the announcements of our upcoming series.

Next Program: Saturday, May 14th at 11:00 AM
Topic: Driving and Recreation
Host: Robin Owen  Presenter: Dr.Robert Fisher MD, PhD
Phone: 1 (224) 501-3212  Access Code: 678-579-925"
Mighty Mike Basketball Camp
Slam-Dunk!

This year a combined total of 42 children ages six to 17 enjoyed an afternoon in Sacramento and Atherton with Mighty Mike Simmel--a former Harlem Wizards basketball player.  As a young boy, Mike was almost
Sacramento Campers
forced to stop playing basketball because he had epilepsy. Despite many barriers, he went on to reach his goal of playing on a professional team. Mighty Mike captured the camper's attention by sharing his own  story, demonstrating tricks, and giving a basketball clinic while sending the message to never give up on  
Atherton Campers
your dreams

Each child with epilepsy was able to bring a friend or sibling. Students from Christian Brothers High School and Sacred Heart Schools volunteered as coaches for each squad and Dr. Ashutosh Raina from Sutter Health Sacramento and Dr. Brenda Porter from Lucile Packard Children's Hospital Stanford, volunteered as our onsite physicians. 

The camp was made possible by sponsorships and donations from Sacred Heart Schools, Atherton, Christian Brothers High School, Max Berry and the Berry Family, Kerry Youker and the Youker Family, Siblings4Seizures, Somersaults, Sacramento Kings, Cyberonics, LundbeckHuman Epilepsy Project and the Sacramento Bee Book of Dreams. Kids had a great time and are already talking about next year!
Activities Galore
Art! Stroll! Coelho Camp!

STUDIO E ART THERAPY For Teens With Epilepsy
(For ages 10-18)
UCSF: April 30, 2016 / 10:00 AM - 11:30 AM
Stanford: May 7, 2016 / 9:45 AM - 11:45 AM

 

Socialize! Make new friends. 

Hang! With people that understand

Talk! About the challenging aspects of epilepsy

Make! art that looks amazing. 

Art Show! on the last week, display art at UCSF

Fun Projects! Mono printing, magazine collage, etc. 
Learn more here.  
 

May 21, 2016,  Six Flags Discovery Kingdom, Vallejo

There's still time
to sign up and  fund-raise!

Learn more here.
 

June 26-July 1, 2016,  CYO Camp, Occidental, CA 

 

Gain Independence!
New Friends!
Fun Activities!

Learn more here


Rare Epilepsy Network
TESS Research Foundation and
SLC13A5 Deficiency

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.

TESS Research Foundation and
SLC13A5 Deficiency

Many families spend years never knowing the underlying cause for their child's epilepsy. Genetic testing, a simple blood test, is providing more and more families with answers.
SLC13A5 Deficiency is a newly discovered, genetic epilepsy. If both parents are carriers, there is a 1 in 4 chance that their  children will develop this type of epilepsy. This form of epilepsy affects both boys and girls of many races and ethnicities. Children with SLC13A5 Deficiency begin having seizures within the first days of life. Although their brain MRIs appear normal, the children have developmental and cognitive deficits and their seizures are often difficult to control. 

The good news is that SLC13A5 Deficiency is now available on genetic screening panels. This simple blood test can be ordered by a neurologist or geneticist and can help diagnose the root cause of this form of genetic epilepsy. Learn more at  TESSresearch.org.

We are stronger together!
TESS Research Foundation is a 501c3 nonprofit that provides accurate information, support and research about SLC13A5 Deficiency to families and health care providers. TESS Research Foundation proudly participates in the REN. If you or a loved have SLC13A5 Deficiency or another rare epilepsy, please sign up for the REN today.
Volunteer of the Month
Bryan Farley

Ever wonder whose behind the camera at events?
An active EFNC volunteer since 2009, Bryan Farley has acted as a professional photographer for over ten events held by the Epilepsy Foundation of Northern California.  

Bryan Farley is a photographer and father living with epilepsy in the East Bay. He  experienced his first seizure more than 30 years   ago at age 16.Bryan is a teacher, an advocate and creative writer.

Bryan, thank you for sharing your talents and creative work with constituents in Northern California!