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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.”

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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.”

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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.

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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!”

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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

January Wellness Workshop: Food is Medicine

We’re excited to welcome guest speaker Katy Rose to our free January Wellness Workshop, hosted virtually on Thursday, January 25, 2024, from 6:00–7:00 p.m. PT.

As a Certified Functional Medicine Health Coach and Wellness Educator, trained formally through The Functional Medicine Coaching Academy, in partnership with The Cleveland Clinic’s acclaimed Institute of Functional Medicine, Katy’s platform is based in the healing power of food, food as medicine, and the body’s natural ability to heal chronic disease and slow the aging process through lifestyle choices. This includes, but is not limited to, diet, exercise/movement, sleep, relaxation activities, stress management and relationships.

In addition to teaching the newest science in these areas, Katy’s practice addresses the emotional and cultural challenges that can hamper healthy lifestyle choices, and shows how making simple lifestyle adjustments “a smidge a day” can lay the groundwork for a lifetime of change and wellness.

Drawing on her past, personal experience with morbid obesity, emotional eating, food addiction, and ultimately a major health crisis, Katy intimately understands the challenges of clients she supports through grace and understanding on their journey to wellness, assisting each one on their individual and unique healing process and helping them achieve the life they desire.

To RSVP for the Wellness Workshop: Food is Medicine, reach out to our Programs Manager Sarah Waters at 619.296.0161 x103 or email sarah@epilepsysandiego.org.

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Epilepsy Foundation of San Diego Events

Meet the Judges of our 30th Anniversary Gingerbread Competition

We’re honored and excited for Chef Jose Barajas of Mmm…Cakes in Chula Vista, Chef Charity George of Nailed It! on Netflix, Chef Maeve Rochford of Sugar and Scribe and Emmy Award-winning TV host Sam “the Cooking Guy” Zien to join us on December 6, 2023, at The Natural History Museum in Balboa Park to judge our 30th annual gingerbread competition!

Chef Jose Barajas is the owner of Mmm…Cakes in Chula Vista and has been a big part of the renaissance of Chula Vista’s Third Avenue.

His bakery has a fun “Golden Girls” vibe to it and has brought gourmet cake creations to Chula Vista. Chef Jose has competed on TLC and Food Network shows, including The Next Great Baker and was the Gingerbread Showdown champion. Chef Jose has also worked behind the cameras for Netflix’s Sugar Rush and HBO’s Baketopia.

Chef Charity George, also known as the “Sugar Sorceress,” damaged not one, but two Easy Bake Ovens as a child before her mother decided to teach her how to use the “big” oven. She went to culinary school in Paris, France, at Le Ritz Escoffier and finished her Pastry Arts degree at Grossmont College.

Chef Charity is the Pastry Chef and Cake Artist for Nailed It! on Netflix. She’s the magic hands that makes all the cakes and other treats the contestants attempt to copy in the show. Charity specializes in chocolate and sugar art, particularly with regards to wedding and extreme cakes. She owns d’Zrt Cake Studio.

Aside from all her work on Nailed It!, Charity has been a contestant on TLC’s Ultimate Cake Off, was featured on TLC’s Fabulous Cakes and the Niecy Nash Wedding Bash. On Food Network, Charity has appeared on Cake Wars and Halloween Wars (season 2, 5 & 7) and she was featured on the pilot episode of SugarDome that aired as a special of Cupcake Wars.

Chef Maeve Rochford is the owner of the award-winning Sugar and Scribe, a small upscale bakeshop that debuted in 2010 in Pacific Beach and is now located in La Jolla. Over the years, Sugar and Scribe has been listed as one of the 50 Best Shops in the West by Sunset Magazine and recognized in 2015 as Best New Restaurant in La Jolla among other accolades.

Maeve has also been named Food Network’s Holiday Baking Champion in 2015, Irish Woman of the Year in 2016 and was awarded Chef of the Year in 2019 by the California Restaurant Association.

Maeve’s love of food and the memories that great foods inspire drive her to create morsels of excellence every day.

“I think my keen understanding of flavor combinations comes from mixing leftovers, never being afraid of food and loving the experience of cooking,” she shares. “When I’m happy, I eat. When I’m sad, I eat. When I’m angry, I eat. So it’s important to have great food for every emotion!”

Sam Zien quit a biotech job in July of 2001 to try his hand as the host of a travel show.  But a month before a trip to shoot in Tokyo and Hong Kong, September 11th happened – and that changed everything.

He decided to stick with TV, but switched from travel to cooking and eventually landed a twice-weekly 2-minute cooking segment on a local morning news program.  The segments caught on and grew into a 30-minute show appropriately named Sam the Cooking Guy – an irreverent mix of humor and easy-to-replicate recipes. It’s “reality” cooking in the sense that whatever really happens when he shoots, stays in the show. Eventually, Discovery Health came along and Just Cook This! with Sam the Cooking Guy was born. 

Known for his “big in taste and small in effort” philosophy, Sam has 15 Emmy awards, 3 cookbooks and a dozen visits to the Today Show. He also creates video content for companies like Chosen Foods, Bed Bath & Beyond and Bumble Bee Foods. Sam has a YouTube Channel and owns three San Diego restaurants – Not Not Tacos, Samburgers and Graze.

We appreciate Chef Jose, Chef Charity, Chef Maeve, and Sam for making time to attend this year’s Gingerbread City Gala and to judge our annual gingerbread competition!

Many thanks to each of our sponsors, underwriters and patrons! Their support not only made this event possible, but it also bolsters our ability to provide free resources to San Diegans impacted by epilepsy.

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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.