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Epilepsy Foundation of San Diego

Advocate for a Rare Disease Advisory Council in California

White text in a transparent magenta circle, layered on a pink-toned overhead photo of the California legislature. Text says, "Action appeal. Submit a letter in support of AB 2613 for a rare disease advisory council in California." The white logo for the Epilepsy Foundation of San Diego County appears in the bottom right corner.

On April 23, a bill to create a Rare Disease Advisory Council in California known as AB 2613 will be heard in the Assembly Health Committee. Please join the Epilepsy Foundation of San Diego County (EFSDC) and National Organization for Rare Disorders (NORD) in making sure the Committee hears from California advocates!

WAYS TO HELP

Submit a position letter by Sunday, April 21, 2024. Follow these steps:

  1. Write a letter, as short or as long as you’d like, addressed to the Assembly Committee on Health. For help, personalize and send this sample letter provided by the National Organization for Rare Disorders (NORD).
  2. Follow these instructions to submit your position letter through the California Legislature Position Letter Portal.

Reshare and engage with our social media post about AB 2613. These actions truly matter! When you reshare our Instagram, Facebook, LinkedIn and Twitter/X post helps put the appeal in front of people we wouldn’t otherwise reach without your support.

Patients with rare disorders face unique challenges every day, and lawmakers often struggle to understand the needs of the rare disease community. A Rare Disease Advisory Council will provide opportunities for patients and advocates throughout California to educate lawmakers and make formal policy recommendations to state leaders about pressing issues.

If we take this action together, we have an excellent chance of seeing our state create a Rare Disease Advisory Council. Please submit a position letter today!

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Epilepsy Foundation of San Diego Our Programs

Introducing #MyEpilepsySDStory

We’re excited to mark International Epilepsy Day 2024 with the launch of #MyEpilepsySDStory, our new, year-round initiative that provides a platform for people in San Diego who are impacted by epilepsy to share their experience, and to see it alongside testimonies from others in the county affected by epilepsy.

Sharing our stories and seeing them together has healing and transformative power. Anyone who lives in San Diego County and is impacted by epilepsy is welcome to submit their story through our #MyEpilepsySDStory form. Once reviewed for appropriateness, submitted stories are added to the #MyEpilepsySDStory collection.

Submit to #MyEpilepsySDStory

“It’s so important and special for me to have a community where I feel understood, and at the same time, feel I can help and support others,” shared Lisa, a member of EFSDC’s community who often attends our free, virtual monthly support groups. Lisa’s story is one of three narratives already available to read in our #MyEpilepsySDStory collection.

“Meeting friends and other people with epilepsy has made me feel less alone.”

If you have epilepsy, or are a parent, caretaker, relative, friend, teacher or coworker of someone who lives with epilepsy, your experience has meaning—especially to those who feel pressure to mask their journey. If we can speak and carry our truths together, we can shape a world that enables everyone impacted by epilepsy to thrive. Add your story to our collection today!

Submit to #MyEpilepsySDStory
Read the #MyEpilepsySDStory Collection
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Epilepsy Foundation of San Diego Events

San Diego Gives: Raising $4000 in 10 days for San Diego’s Epilepsy Community

Promotional graphic for EFSDC's participation in San Diego Gives 2023.

We’re excited to take part in San Diego Gives 2023, an annual region-wide fundraising period for San Diego-based nonprofits that culminates on Thursday, September 7, 2023, known as San Diego Gives Day.

Give now to EFSDC's San Diego Gives campaign

Our goal for this campaign is to raise $4000 between now and September 7 through our San Diego Gives fundraising page. Funds raised during this period will enable us to continue to provide free programs and services to San Diegans impacted by epilepsy, including counseling, career development, advocacy information, referrals, education forums and support groups.

But we need your help over the next 10 days! Please help us reach our fundraising goal with a donation of $25 on a one-time or monthly basis as well as:

  • Sharing our social media posts on Facebook, Instagram, LinkedIn and Twitter to your feeds.
  • Finding out if your company or employer matches individual donations and asking them to match your gift to the Epilepsy Foundation of San Diego County.
  • Asking your faith community to share a link to our San Diego Gives page in their e-newsletters or printed weekly bulletin.

Currently, over 50,000 people in San Diego have been diagnosed with epilepsy. Together, we can help kids, teens, adults and seniors living with epilepsy continue to thrive in all aspects of their lives. Please give $25 today and spread the word!

Click here to donate to our San Diego Gives page
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Epilepsy Foundation of San Diego Events

Help us win an All-In 4 Change grant from Harrah’s Resort Southern California

Purple text featured alongside fun photos from past events hosted by the Epilepsy Foundation of San Diego County, in which participants are wearing purple attire or working on purple-colored crafts. Text in the top left corner of the graphic says, "Vote for us to win a Harrah's Resort SoCal's All-In 4 Change grant!" Text in the center left of the graphic says, "Multiplying fun to the power of purple." Color logo of the Epilepsy Foundation of San Diego County in the bottom left corner.

Please vote now for the Epilepsy Foundation of San Diego county to win between $4000–$55,000 from the Harrah’s Resort Southern California’s All-In 4 Change grant program!

Vote Now for the Epilepsy Foundation of San Diego County

Our goal is to be among the top 10 vote-getting organizations by the time voting ends at 5:00 p.m. PT on Monday, August 28, 2023. You can help us get there by voting now and getting involved in each of the following ways:

Vote between 5–10 times daily for the Epilepsy Foundation of San Diego County. Voting is open until 5:00 p.m. PT on Monday, August 28, 2023. You’re allowed to vote more than once every day, as long as it’s you voting and not a bot. Each time you vote, you improve our chances of winning a grant in the range of $4000–$55,000.

To vote more than once, either clear your browser data of the polling website or copy and paste the URL harrahssocal.com/vote in a private window/Incognito window (private window in Safari and Firefox, Incognito window in Chrome).

If voting via private/Incognito window: Make sure to close the window after voting, and then reopen a new private/Incognito window, enter harrahssocal.com/vote, and vote again.

Reshare our All-in 4 Change posts on social media. Rallying your social media networks to vote for the Epilepsy Foundation of San Diego County to win a Harrah’s Resort SoCal’s All-In 4 Change grant is as easy as resharing, retweeting, or quote tweeting!

Please follow us on Instagram, Facebook, X (aka Twitter) and LinkedIn, and reshare our posts about this campaign multiple times between now and August 28, 2023.

If you’d like quote share/tweet, please include these hashtags in your post: 

#HarrahsSoCal #AllIn4Change #Funner #EpilepsySD #EndEpilepsyTogether #PurplePower

Vote for EFSDC to win a Harrah's Resort SoCal All-In 4 Change grant

Winning a grant from the Harrah’s Resort SoCal’s All-In 4 Change program would not only help us maintain our work in building community and fueling fun for individuals in San Diego living with epilepsy, but it would help us reach and connect with many more people and families impacted by epilepsy in San Diego County all year round.

Help EFSDC be among the top 10 organizations with the most votes! Vote for the Epilepsy Foundation of San Diego County in Harrah’s Resort SoCal’s All-In 4 Change grant program today.

Click here to vote now
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Epilepsy Foundation of San Diego Events

Epilepsy Education Conference: Full Program

Collage of daytime color profile photos of nine speakers participating in the 2023 Epilepsy Education Conference.

Registration is $20 online through Friday, July 28, and $25 at the door. Those who register also gain access to our library of new video presentations provided by local and regional epilepsy experts, which can be watched from the comfort of one’s home.

EVENT DETAILS 

8:00 am • Onsite registration, attendee check-in, and Sponsor Marketplace opens. Light refreshments served. 

8:30 am • Welcome by Wendy Urushima-Conn, President & CEO of the Epilepsy Foundation of San Diego County

8:35 am • Keynote featuring Dr. Lee Rice, FAAFP, FAOSM, FAMSSM

9:15 am • Program Break. Attendees are invited to visit the Sponsor Marketplace, to enjoy refreshments, and to network.

9:30 am • Panel of Professionals featuring Sophia Ceulemans, Dr. Abraham Chyung, Dr. Jeffrey Gertsch, Dr. Robert Gray, Dr. Maria A. Montenegro and Dr. Howard Taras. Facilitated by Wendy Urushima-Conn.

10:45 am • Program Break. Attendees are invited to visit the Sponsor Marketplace, to enjoy refreshments, and to network.

11:00 am • Panel of Lived Experience, facilitated by Kelley Grimes, MSW.

12:15 pm • Closing Remarks, followed by Sponsor Marketplace and Networking.

CONFIRMED SPEAKERS 

Listed in ascending alphabetical order by surname.

Round photo of Sophia Ceulemans.Sophia Ceulemans is a clinical pediatric genetic counselor. She works with patients and their families with known or suspected genetic conditions, specializing in neurological conditions like epilepsy, neuromuscular conditions, rare disorders, and others. Sophia graduated with Marquette University with an honors degree in Biochemistry and Molecular Biology and completed her masters degree in Genetic Counseling at University of Michigan, Ann Arbor. She is actively involved in the National Society of Genetic Counselors.

Round photo of Dr. Abraham Chyung.Dr. Abraham Chyung is a neurologist specializing in the evaluation and treatment of memory and seizure disorders. With a doctorate degree in Alzheimer’s disease research, he has a strong clinical interest in conditions that cause memory loss.

Round photo of Dr. Jeffrey Gertsch.Dr. Jeffrey Gertsch is a neurologist and Associate Professor of Neurosciences at UCSD School of Medicine.

Round photo of Dr. Robert Gray.Dr. Robert Gray received his Ph.D. in school psychology from the University of Texas at Austin. He went on to specialize in pediatric neuropsychology through completion of his internship and postdoctoral fellowship at the University of Minnesota Medical School. Dr. Gray has held positions as Assistant Professor of Psychiatry and Behavioral Sciences at the Johns Hopkins School of Medicine, staff pediatric neuropsychologist at the Kennedy Krieger Institute, and Voluntary Assistant Clinical Professor in the department of Psychiatry at the University of California, San Diego. Dr. Gray is the clinical director of pediatric neuropsychology services and training director of the postdoctoral residency program in pediatric neuropsychology at Advanced Neurobehavioral Health of Southern California. Dr. Gray also provides neuropsychological evaluation and consultation services for Rady Children’s Hospital of San Diego. Dr. Gray has been awarded diplomate/board certification status in clinical neuropsychology and pediatric subspecialization status through the American Board of Clinical Neuropsychology and American Board of Professional Psychology.

Round photo of Kelley Grimes.Kelley Grimes, MSW is a counselor, speaker, internationally bestselling author, Aspire Magazine expert columnist, and founder of Cultivating Peace and Joy. She received her Masters degree in Social Work from the University of Denver and has counseled in domestic violence, substance abuse, and mental health fields, as well as with families impacted by chronic health challenges.

Round photo of Dr. Maria A. Montenegro.Dr. Maria A. Montenegro is a pediatric neurologist and epileptologist currently working at Rady Children’s Hospital / University of California San Diego School of Medicine. Her clinical expertise is in pediatric epilepsy, with an emphasis on epileptic encephalopathy and EEG. She completed medical school, residency and PhD at the University of Campinas (Brazil) and postdoctorate research fellowship at Columbia University (New York) and Herscot Center for Tuberous Sclerosis Complex (Boston). Prior to her current position, she held an academic faculty appointment at the University of Campinas (Brazil) where she was the head of Pediatric Neurology.

Round photo of Dr. Lee Rice.Dr. Lee Rice is the founder of Lifewellness Institute and a premier medical expert on wellness in the United States and internationally, with more than 30 years of experience as a family and sports medicine physician. He earned his B.S. degree from the University of California, Santa Barbara, and received his D.O. degree from Kirksville College of Osteopathic Medicine (now A.T. Still University). He completed his internship and Family Medicine residency in the U.S. Navy Medical Corps. Currently, he is board certified in Family Medicine with a Certificate of Added Qualification in Sports Medicine; he is also a diplomate of the American Board of Integrative and Holistic Medicine.

Round photo of Dr. Howard Taras.Dr. Howard Taras received his medical and pediatric training at McMaster University (Hamilton, Canada) and the Hospital for Sick Children in Toronto. He is a general pediatrician and his role at UCSD is to operate as a medical consultant to approximately 50 school districts across California, including most large school districts in San Diego County.

Wendy Urushima-Conn is the President & Daytime round color photo of Wendy Urushima-Conn.CEO of the Epilepsy Foundation of San Diego County. She has more than 25 years of experience in community outreach, fundraising and marketing. She previously served as president and CEO of the Asian Business Association and associate executive director of the Center for Community Solutions where she was the chief fundraising and marketing officer focusing on sexual assault/domestic violence intervention and prevention. Wendy also worked for more than a decade at KGTV/10News as community affairs manager, promotion manager and as a weather and traffic reporter.

Donate Now: Epilepsy Education Conference
Sponsor appreciation graphic for the 2023 Epilepsy Education Conference hosted by the Epilepsy Foundation of San Diego County. Logos includes for Neurelis, Sunovion, Jazz Pharmaceuticals, SK Life Science, Neurocrine Biosciences, Longboard Pharmaceuticals, SDGE, and Bloom Science.
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Epilepsy Foundation of San Diego Events

Sharon’s Ride.Run.Walk 2023 Recap

Daytime group photo from Sharon's Ride.Run.Walk. 2023.

Epilepsy Foundation of San Diego County is grateful to our supporters and donors, whose generosity raised $120,000 for individuals and families impacted by epilepsy in San Diego! Their participation and contributions make a difference to the nearly 50,000 San Diegans affected by epilepsy.

If you were unable to attend Sharon’s Ride.Run.Walk. 2023 and would still like to make an impact, click below to donate now.

Donate now

Participants ran, walked and biked together in honor of loved ones with epilepsy.

Congratulations to Team Anaya/Hilkene for achieving Top Fundraiser status once again by raising over $30,000! We appreciate your fundraising efforts and more than 24 years of support. 

Congratulations, too, to our additional Top Fundraising Teams—Team Emily, Team Reiko, Brainstormers and Team Zapoticzny!

Thank you to all the participants and teams for attending and making it a special day.

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Please join us for our next annual event—the Epilepsy Education Conference, which takes place on Saturday, July 29, from 8:30 a.m. to 12:30 p.m. at the Academy of Our Lady of Peace in San Diego.

Register Now: Epilepsy Education Conference
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Epilepsy Foundation of San Diego Events

Epilepsy Education Conference: Join us on July 29, 2023

Promo graphic for the 2023 Epilepsy Education Conference hosted by the Epilepsy Foundation of San Diego County.

Register today to join us at the 2023 Epilepsy Education Conference, which takes place on Saturday, July 29, from 8:30 a.m. to 12:30 p.m. at the Academy of Our Lady of Peace in San Diego.

Gathering together under the theme of Wellness and Thriving, experts speaking at this year’s conference will share new research, emerging technologies and treatment options, medicine and therapies to manage seizures, as well as practical solutions for anyone affected by epilepsy.

“It was very interesting to learn of all of the advances,” shared a past conference attendee who was originally diagnosed with epilepsy before the advent of MRIs. “It was a well planned conference covering important topics and allowing questions and with good, interesting speakers.”

As in recent years, everyone who registers for the conference will also gain access to a library of video presentations by San Diego’s top epilepsy professionals and physicians. 

“I always learn new things and in fact took screenshots of several of the wearable devices in case they might be advantageous for my daughter,” shared a past registrant who took advantage of the conference’s library of video presentations. 

Early bird registration is $15 through June 30, $20 beginning July 1, and $25 at the door. Clients, parents and caregivers, medical professionals, teachers, school personnel, employers, and advocates of all ages are welcome to attend. We look forward to seeing you!

Volunteer. The success of our events is made possible because of our amazing volunteers! Help is needed in a variety of event operations, including set-up, registration and guest check-in, breakdown and more. Please sign up today to volunteer on Saturday, July 29.

Support our programs. Our ability to provide evidence-based resources, programs and events that help individuals and families in San Diego impacted by epilepsy is made possible through the generosity of our community.

Sponsorships and underwriting packages for the Epilepsy Education Conference are available at preset and custom-tailored levels. Individuals can also donate directly to the organization. 

The deadline for sponsorship is July 7, 2023. To learn more about each package, please contact Ingrid de Llamas at ingrid@epilepsysandiego.org. Please reach out or donate today!

Donate today!
Sponsor appreciation graphic for the 2023 Epilepsy Education Conference hosted by the Epilepsy Foundation of San Diego County. Logos includes for Neurelis, Sunovion, Jazz Pharmaceuticals, SK Life Science, Neurocrine Biosciences, Longboard Pharmaceuticals, SDGE, and Bloom Science.
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Epilepsy Foundation of San Diego Events

Join the Epilepsy Foundation of San Diego County on Sunday, April 30, 2023 for Sharon’s Ride.Run.Walk

Promo graphic for Sharon's Ride.Run.Walk. 2023 featuring past walking teams at De Anza Cove, Mission Bay.

Online registration is now open for Sharon’s Ride.Run.Walk 2023, coordinated and hosted by the Epilepsy Foundation of San Diego County! 

We’re excited to return to De Anza Cove in Mission Bay, San Diego, to host our annual event that gets San Diego active in the name of epilepsy awareness. Rally your friends and family to come out and show their love for San Diego’s epilepsy community. 

This fun-filled, outdoor community event consists of a 5K run/walk, a 15-mile bike ride and a community picnic. Pre-register online or register onsite as an individual or as a team.

Pre-registration is $45 until Friday, March 31, 2023. After that, pre-registration is $50.

Register today for Sharon's Ride.Run.Walk.

Sharon’s Ride.Run.Walk is also made possible with the help of volunteers, and the charitable support of sponsors and individual and team donors. 

Volunteer for Sharon’s Ride.Run.Walk. Volunteers are needed to help with a variety of event operations, from setup and breakdown, to cheering our race participants on towards the finish line. This is an ideal outdoor volunteering event, especially if you or someone you know has volunteer-hour goals for 2023.

Sign up to Volunteer

Sponsor, underwrite, fundraise, or donate to Sharon’s Ride.Run.Walk. Sponsorships and underwriting packages are available at preset and custom-tailored levels. Individuals and team leaders can donate directly at preset or custom-filled levels or set up their own fundraising page to help us reach our fundraising goal of $100,000. 

When the average cost of care for a person living with epilepsy in the U.S. can be as much as $15,000/year, the free resources provided by the Epilepsy Foundation of San Diego County are invaluable. Please help us improve the lives of people and families in San Diego impacted by epilepsy. Sign up to participate, volunteer, sponsor, fundraise, and/or donate today!

Become a sponsor or underwriter
Start a fundraising team
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Epilepsy Foundation of San Diego Events

Sharon’s Ride.Run.Walk. in April will help spread awareness and raise money for San Diegans with Epilepsy.

SAN DIEGO (KUSI) – Feb. 14 is International Epilepsy Day. Epilepsy is the worlds 4th most common neurological disorder.

On April 24, 2022, Sharon’s Ride. Run. Walk. will help educate, spread awareness, and raise critical funds to make a difference for the 50,000 San Diegan’s living with Epilepsy.

During this event you can either choose to bike ride 15 -miles or run/walk the 5k.

Registration is open now! Register or fundraise for the event at: https://www.epilepsysandiego.org/

On Good Morning San Diego, KUSI’s Paul Rudy talked with Wendy Urushima-Conn, President & CEO of the Epilepsy Foundation of San Diego, about the Ride, Run, Walk coming up in April.

1 In 10 People Will Have A Seizure In Their Lifetime
1 In 26 Will Be Diagnosed With Epilepsy

This article was originally published by KUSI News.

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Epilepsy Foundation of San Diego

National Epilepsy Awareness Month

Living with epilepsy can have its challenges. Some people with epilepsy hide their disorder, which can lead to feelings of isolation, helplessness and even depression. Adults with epilepsy oftentimes experience changes in their quality of life, such as mobility, relationships, employment, and social interactions. Children and teens with epilepsy find themselves feeling isolated and misunderstood; they may lose friends, may not be invited to birthday parties, or may be ostracized or even teased or bullied at school.

Epilepsy affects everyone. Everywhere. Period. Thanks to YOU, we have upped our game to better serve YOU.

The Epilepsy Foundation provides programs and education to make a safer place for YOU. The Epilepsy Foundation raises awareness and funds to provide help and serve YOU. The Epilepsy Foundation advocates for new laws to address issues that affect YOU. The Epilepsy Foundation invests in research and innovation to bring new therapies and technology to YOU faster than ever.  Let’s take action together and make November the loudest and purple-est National Epilepsy Awareness Month ever for YOU! This November, be everywhere. Educate everyone.

Get involved and help spread awareness:

Join us at our Upcoming Events

CLICK HERE
CLICK HERE

Take Action for Everyone Affected by Epilepsy

Share your action with your friends, family and followers to help them better understand epilepsy and inspire our community. Create a social media post telling us why it is important to take action for epilepsy.

#MyNEAMAction #NEAM2022

Fundraise Your Way to Help Fund Our Programs & Services

Start a Fundraiser on Facebook on behalf of the Epilepsy Foundation of San Diego and help raise awareness and critical funds for the San Diego epilepsy community.

#MyNEAMAction #NEAM2022

Get Seizure First-Aid Ready to Help Save a Life

Did you know that 1 in 10 people will have a seizure in their lifetime?

Make sure you are prepared to help a loved one, coworker, peer, or someone else in your life. Learn #SeizureFirstAid basics this November by taking our 30-minute, on-demand #SFAReady course HERE or contact us for personalized training at no cost. #MyNEAM Action

Donate to the Epilepsy Foundation of San Diego

Make a direct impact on the no-cost programs and services our foundation provides including training programs on seizure recognition and first aid, college scholarships, as well as access to specialty and suppotive care for the more than 50,000 people living with epilepsy here in San Diego.
Donate Now

In the News

Our President & CEO Wendy Urushima-Conn talks about National Epilepsy Awareness Month and our Gingerbread City fundraising gala on KUSI’s Good Morning San Diego.

Challenges of Epilepsy: Stats

 

  • 150,000 new cases of epilepsy occur each year in the U.S.

  • 470,000 children have epilepsy

  • 336,000 kids have at least one seizure annually.

  • 30% of people with epilepsy do not gain full control of their seizures and continue to struggle day-to-day with the threat of imminent seizures.

  • 32% of adults with epilepsy can’t work, compared with 7% of adults without epilepsy who can’t work.

  • 29% of adults with epilepsy can’t use a car or public transit to get places, compared with 8% of adults without epilepsy.

  • 21% of adults with epilepsy can’t pay for medicines vs. 9% without epilepsy.

  • 4 in 10 kids who had at least one seizure in the past year live in homes at or close to the poverty level.

  • 3 in 10 kids who had at least one seizure in the past year live in homes without enough food.

Our Mission

With your help, The Epilepsy Foundation of San Diego County improves the lives of people affected by epilepsy through education, advocacy, research, and connection. 

Donate Now