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Epilepsy Foundation of San Diego

Advocate for a Rare Disease Advisory Council in California

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 Stories

Ariana’s EpilepsySD Story

Having experienced seizures for the past 15 years, Ariana Green feels she can give support and encouragement to others by sharing her story. In fact, helping others who experience severe epilepsy is what she feels born to do.

“I have learned a great deal about how to cope with my condition and still have a great life full of wonderful experiences and adventures,” said Ariana.

“My story starts before I was born. The doctors detected an arachnoid cyst on my brainstem. It was about the size of a plum,” said the Mission Hills resident. As a result, Ariana began to experience life-threatening seizures that would last about 5-8 minutes long at the age of 3.

“I needed rectal Diazepam for them to stop,” she said. “We had to try something different.”

When Ariana was 5, her care was transferred to the Ronald Reagan UCLA Medical Center, where she met Dr. Jason Lerner, a pediatric neurologist, and Dr. Gary Mathern, a pediatric neurosurgeon. Ariana underwent a 9-hour partial hemispherectomy that removed the temporal, occipital and parietal lobes of her brain.

“The seizures stopped for two years but then came back,” said Ariana.

She continued to have different forms of seizures including partial seizures, focal seizures, and drop attacks over the next decade. At 15, she underwent a second operation, a procedure that took five hours to complete. “I had the RNS NeuroPace implant surgery that zaps the abnormal electrical activity before it spreads to the other side of my brain which stops the seizures. It has reduced my seizures by 75%.”

Staying connected to the epilepsy community in San Diego through The Epilepsy Foundation of San Diego County’s monthly support groups enables Ariana to meet new people who also live with epilepsy, and attending the Foundation’s annual conferences allows Ariana to hear doctors speak about the recent advances in medicine and treatment for those living with refractory epilepsy.

“I also enjoy speaking about my story because my situation is very unique in the fact that I am able to live with only half my brain compared to other people,” she said. “It is not easy for me to learn very complex subjects like math with half of my brain. It is a struggle, especially considering that I am required to take Calculus 1 in my first year of college next year. I am concerned that I won’t have any modifications to the class like I have now. I want to have as much support as possible so I can survive Calculus 1. I can’t wait to start college. I am excited.”

Ariana acknowledges that epilepsy isn’t easy to treat, that living with epilepsy is difficult sometimes, but believes in becoming seizure-free someday. It’s from that belief that Ariana encourages others to remain hopeful.

“Keep going so that you can envision seizure freedom and get where you need to be, which is an independent adult that is not relying on everyone to do things that you should be able to do yourself,” said Ariana. “Envision seizure freedom in your dreams at night. Do the hard work and you can get there.”

•••

We appreciate Ariana for sharing her epilepsy journey!

What have you learned from your epilepsy journey so far? Let us know by adding your experience to #MyEpilepsySDStory 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.

“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!

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Epilepsy Foundation of San Diego Our Stories

Lisa’s EpilepsySD Story

Over the years, Lisa has seen many people be a part of the caring and supportive community nurtured by the Epilepsy Foundation of San Diego County through their participation in the Foundation’s events and Epilepsy Support Groups.

“We all have different experiences, but at the same time can connect with others who know what it’s like to have seizures, and the weight we all carry on a daily basis,” said Lisa.

For Lisa, the monthly support group meetings help cultivate community by providing space for people with epilepsy, as well as those who have loved ones living with epilepsy, to feel seen and heard which is especially important when epilepsy is still so misunderstood. Lisa appreciates how the meetings also provide opportunities to learn more about epilepsy from professionals and those with lived experience, such as ways to cope and to ask for help.

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

•••

Let us know what it’s been like for you to connect with San Diego’s epilepsy community. Add your experience to #MyEpilepsySDStory today!

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Epilepsy Foundation of San Diego Our Stories

Len’s EpilepsySD Story

Relocating to a city can leave anyone feeling vulnerable, especially when someone lives with epilepsy. So, it can be a huge uplift to connect with others with similar lived experiences before establishing new roots.

“I was able to gain a feeling of community before I moved to the area,” said Len. For Len, being able to attend our series of Epilepsy Support Groups online and in real time has made an impact because they were able to reach many people ahead of moving to San Diego.

“It was great to feel that local connection, and see and hear stories about how I’m not alone in my disability from the moment I relocated to the area,” said Len.

•••

Are you someone who is impacted by epilepsy and new to San Diego? Let us know what it’s been like for you to connect with San Diego’s epilepsy community. Add your experience to #MyEpilepsySDStory today!

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Epilepsy Foundation of San Diego Our Stories

An anonymous member’s EpilepsySD Story

For one anonymous community member, the benefit gained from the community built at the Epilepsy Foundation of San Diego County centers on being able to reach the organization’s team. 

“I find the facility and all the staff to be very professional and interested in helping those with epilepsy,” they said, observing that EFSDC has cultivated a sense of community in San Diego County because the team makes themselves available.

“The foundation is always open and we have weekly meetings,” they said. “Good stuff!”

•••

Are you impacted by epilepsy and live in San Diego? Please consider adding your experience to #MyEpilepsySDStory today!

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Epilepsy Foundation of San Diego Events

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

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.

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!

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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

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!

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

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.

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Epilepsy Foundation of San Diego Events

Epilepsy Education Conference: Full Program

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.

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Epilepsy Foundation of San Diego Events

Sharon’s Ride.Run.Walk 2023 Recap

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.

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.

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.