VIRTUAL EPILEPSY RESOURCE VILLAGE DIRECTORY
Inspired by your resolve to harness the spirit of the Walk to End Epilepsy virtually, we launched a ‘Virtual Epilepsy Resource Village’ to bring information you would have accessed at the Rose Bowl to you now online. The Village will highlight one sponsor, exhibitor, partner, or one of our programs each day and the information they would have shared with you onsite at the Rose Bowl. May the contributing resources highlighted in our ‘Virtual Resource Village’ help you and your loved one access resources and provide support in your personal fight to End Epilepsy.
View below to learn more about the resources that were featured on prior days of the ‘Virtual Epilepsy Resource Village’.
The Division of Pediatric Neurology at UCLA Mattel Children’s Hospital has a long tradition of working with the Epilepsy Foundation to raise awareness as well as fundraising for research and training of the next generation of pediatric epileptologists. Here at UCLA we see children and adolescents with all types of epilepsy. We also have a number of subspecialty clinics such as the Adolescent Epilepsy Center at UCLA, The Infantile Spasms Program, Diet Therapy Clinic, the UCLA Child and Adult Neurodevelopmental Clinic and the Tuberous Sclerosis Complex Clinic.
The Adolescent Epilepsy Center at UCLA believes that treating the whole patient and not just the seizures will lead to the best possible quality of life. Our multidisciplinary team uses a biopsychosocial approach which is a holistic model where biological, psychological and social factors are all included in the evaluation and treatment of a patient.
Download a digital Brochure: here
Upcoming Events: Teen Support Group – Every 1st Thursday of the Month
“Social Security has provided financial protection for our nation’s people for over 80 years. Chances are, you either receive Social Security benefits or know someone who does. With retirement, disability, and survivor benefits, Social Security is one of the most successful anti-poverty programs in our nation’s history. We are passionate about supporting our customers by delivering financial support, providing superior customer service, and ensuring the safety and security of your information – helping you secure today and tomorrow.”
Access digital brochures and/or pamphlets provided by Social Security below or visit socialsecurity.gov for more information.
Understanding the Benefits │ Retirement │ Disability Benefits │ Benefits for Children with Disabilities │ Survivors Benefits │ Create My Social Security Account Today │ With you through Life’s Journey
“Sunovion is a global biopharmaceutical company whose spirit of innovation is driven by the conviction that scientific excellence paired with meaningful advocacy and relevant education can improve lives.”
Learn more about Sunovion and their therapies at sunovion.com.
Launched in November 2016 by Sunovion Pharmaceuticals Inc. in partnership with the Epilepsy Foundation, #MyEpilepsyHero seeks to unmask and celebrate the unsung heroes in the fight against epilepsy. We want to connect Epilepsy Heroes of all kinds to inspire and encourage each other with stories of hope, kindness, fearlessness, and perseverance.
Since launch, hundreds of stories from across the US have been shared, resulting in a close-knit and supportive community on Facebook. Our heroes come together to share in the triumphs of each fight and to offer encouragement and support when a hero is having a hard time.
Join our community of Epilepsy Heroes and help spread epilepsy education and awareness. Learn more @MyEpilepsyHero at Facebook.com
Sunovion’s seizure helps you to keep track of the partial-onset seizures you have. Jot down questions and share your thoughts and experiences with your health care team during your next visit. It may be useful to track how you are feeling emotionally, socially, your energy levels, and any treatment side effects you may be having. It also may be helpful to record the details surrounding episodes and recurring symptoms you have so you can share them with your health care provider.
Download the Seizure Diary at http://www.aptiom.com/SeizureDiary.pdf
Dr. Lance Fogan works to raise epilepsy awareness as Professor of Neurology at UCLA and as the author of DINGS, a medical mystery novel. Its theme for adult readers is the mystery of why is a bright school boy failing 3rd grade? His non-convulsive blank-out seizures are not recognized. As the novel progresses it teaches epilepsy. A practical glossary for the lay person concludes the novel. Only $2.99 as an eBook, DINGS is also available as an audio book and as a soft cover.
Official Book Review: “My rating for DINGS is 4 out of 4 stars. It had great subject matter, its writing style was highly engrossing and its characters were acutely relatable. It wasn’t difficult to form a bond with the characters as they easily gained our sympathy with their situation, made us like them because of their strength and humanized themselves because of their flaws. It was very educational as well as an entertaining story with the added twist of dealing with the very critical issue of epilepsy as its theme. I think everyone should read it.” OnlineBookClub.org ReviewerDiksha 18 Nov 2018, 08:26
Contact Dr. Fogan at Lfoganauthorservices@yahoo.com │Twitter: @Lance_Fogan │ Facebook: www.facebook.com/lance.fogan │ LinkedIn: www.linkedin.com/in/lance-fogan │Website: LanceFogan.com │ Blog: www.lancefogan.blogspot.com
“Engage Therapeutics is undergoing a phase 2b clinical trial, StATES (Staccato Alprazolam Terminates Epilepsy Seizures), which aims to assess the efficacy and safety of a new rescue therapy in a small handheld inhalable device, Staccato Alprazolam, in terminating a naturally occurring seizure. We are recruiting adult patients with a diagnosis of focal or generalized epilepsy who are willing to participate in a paid, eight-week clinical trial, including up to eight days in an inpatient facility. For more information or to see if you can join the study, go to www.epilepsyhealthstudy.com or www.engagetherapeutics.com.”
Aquestive Therapeutics focuses on improving medications & outcomes for patients with central nervous system conditions through innovative drug delivery technology & scientific expertise. They are a specialty pharmaceutical company that advances medication to solve critical therapeutic problems and meaningfully improve people’s lives. Learn more: Aquestive Therapeutics
“As pioneers of the VNS (Vagus Nerve Stimulation) Therapy System, LivaNova continues to advance medical device solutions for people affected by drug-resistant epilepsy and treatment-resistant depression. This System is also being studied to validate its ability to deliver Autonomic Regulation Therapy for heart failure. Additionally, LivaNova treats obstructive sleep apnea (OSA) with an implantable device that stimulates multiple tongue muscles via the hypoglossal nerve, opening the airway while a patient is sleeping.”
Learn more: LivaNova.com
Sudden Unexpected Death in Epilepsy (SUDEP) is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found. Each year, about 1 out of 1,000 adults and 1 out of 4,500 children with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled.
The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people bereaved by SUDEP and other epilepsy-related deaths.
What does the SUDEP Institute do?
Carries out SUDEP education and awareness for people impacted by epilepsy and medical professionals
Drives and supports research into the causes of and ways to prevent SUDEP
Offers bereavement support services and an online community for those affected by SUDEP
Works together with other epilepsy organizations to find the answers to SUDEP and help families with epilepsy
How can I learn more about SUDEP?
Visit Epilepsy.com for more information.
NeuroPace is dedicated to developing groundbreaking technology and advancing brain science to improve the quality of life for millions of individuals who suffer from neurological disorders. The company’s first product, the RNS System, is the only FDA-approved brain-responsive neurostimulator for the treatment of focal onset refractory epilepsy.
Learn more about the RNS System at neuropace.com.
Los Angeles County Office of Education Head Start and Early Learning Division prepares children for success in school and life by nurturing their social and cognitive development from birth to 5. Enrolled children and families receive educational, health, nutritional, social, and other services at no cost. Care. Teach. Prepare.
Visit prekkid.org for more information.
Zogenix is committed to developing and commercializing transformative therapies to improve the lives of patients and their families living with rare diseases. They are a biopharmaceutical company that provides solutions to patients and their families with rare conditions. Their pipeline includes driving deeper scientific understanding for patients with rare epilepsies such as Dravet Syndrome and Lennox-Gastaut Syndrome.
Learn more: Zogenix.com
Keck Medicine of USC’s Comprehensive Epilepsy center is committed to maintaining an Epilepsy Center of Excellence providing accessible, customized, multi- disciplinary care using the most innovative therapies and research protocols in the quest to cure epilepsy; overcoming financial socioeconomic and cultural barriers throughout the life cycle of each individual patient.
The center was designated by the National Association of Epilepsy Centers as a Level 4 epilepsy specialist center, indicating that the center can provide care for the most complex cases. Providing world-class medical and surgical care for epilepsy across the cultural and socioeconomic spectrum of Los Angeles and beyond, the program also incorporates research and education as key components of its goal to improve knowledge of and find a cure for epilepsy.
Learn more: epilepsy.keckmedicine.org
People’s Care’s mission remains consistent in providing excellent support and advocacy for individuals by valuing personal choice, offering flexible and personalized assistance, and building relationships that support successful community living. They match individuals with professional support staff to create unique support plans with the individual’s best interests in mind. Their disability and behavioral health services include support with independent living options, education and employment, and behavioral health services.
Learn more: peoplescare.com
UCB is a global biopharmaceutical company focused on severe diseases that have significant unmet needs. By putting patients at the heart of everything they do, they enable people to live their best lives, delivering impactful solutions patients value.
Learn more: ucb-usa.com
Day 17: Disability Rights California
Disability Rights California is the largest disability rights group in the nation. DRC advocates, educates, investigates, and litigates to advance the rights, dignity, equal opportunities, and choices for all people with disabilities. They envision a barrier-free, inclusive, diverse world that values each individual and their voice.
Learn more: disabilityrightsca.org
Day 18: American Advocacy Group
American Advocacy Group exists to provide top quality advocacy services for the elderly and individuals, of any age, diagnosed with developmental and physical disabilities.
Learn more: americanadvocacygroup.com
Day 19: Children’s Hospital of Los Angeles
“Children’s Hospital of Los Angeles’ Neurological Institute offers a Comprehensive Epilepsy Center. Their team consists of experts from multiple specialties including Neurology, Neurosurgery, Neuropsychology, Radiology, Anesthesiology, Social Work, Physical/Occupational Therapy, and Nursing. The center provides every tool, procedure, and expert needed for the diagnosis and treatment of all levels of Epilepsy. This includes a state-of-the-art inpatient Epilepsy Monitoring Unit (EMU).
The Comprehensive Epilepsy Center has level 4 certification—the highest available—from the National Association of Epilepsy Centers. The four Pediatric Epileptologists are double Board-Certified in Adult and Pediatric Neurology, with specialty training in pediatric seizure disorders. They personalize care for every child’s unique needs and strive to improve the quality of life for all children living with Epilepsy.”
Day 20: Art of Elysium
The Art of Elysium pairs volunteer artists with communities in Los Angeles to support individuals in the midst of difficult emotional life challenges like illness, hospitalization, displacement, confinement, and/or crisis. They serve medically fragile children, teens, adults, seniors, and those dealing with social, emotional, and mental health issues, and the homeless.
We are so grateful to The Art of Elysium for being a longtime partner and friend of our local Epilepsy Foundation.
Learn more: theartofelysium.org
Day 21: “Gotham Girl Interrupted: My Misadventures in Motherhood, Love, and Epilepsy”
Happy International Women’s Day! Fellow Epilepsy Warrior Alisa Kennedy Jones tells her story of navigating through the ups and downs of life as a woman with epilepsy in her book “Gotham Girl Interrupted: My Misadventures in Motherhood, Love, and Epilepsy”.
Learn more: alisajones.com/book
Day 22: Fiesta Educativa
Mission and Vision- To partner with families, professionals, consumers, friends, agencies and key decision-makers to engender universal support of local, state and national programs and services that specifically support and enhance the lives of persons with disabilities.
Fiesta Educativa is the premier organization that leads the way for empowerment of Latino families and individuals with disabilities in California and across the United States.
Programs and Services: We develop culturally and linguistically competent programs and services for Latino families who have family members with disabilities.
Learn more: fiestaeducativa.org
Day 23: Inland Regional Center
“Inland Regional Center is a springboard to greater independence for people with developmental disabilities in the Inland Empire. We are a non-profit agency that has provided support to people with intellectual disabilities, autism, cerebral palsy, and epilepsy since 1972. Today we provide case management and service coordination for more than 35,000 Consumers in Riverside and San Bernardino counties.
The cornerstone of our service philosophy is person centered planning. Every person is different. They have unique needs, support systems, goals, and preferences. Our service plans reflect that individuality! IRC Service Coordinators work together with our Consumers to create service plans that embody what IRC believes in wholeheartedly: Consumer independence, empowerment, and inclusion. Throughout this site, you can find helpful information about all things IRC!”
Learn more: inlandrc.org/
Day 24: Kurt Eichenwald’s “A Mind Unraveled”
“A Mind Unraveled” By Kurt Eichenwald is described as “The compelling story of an acclaimed journalist and New York Times bestselling author’s ongoing struggle with epilepsy— his torturous decision to keep his condition a secret to avoid discrimination, and his ensuing decades-long battle to not only survive, but to thrive.”
Learn more: kurteichenwald.com/books
Photo Credit: Sylvia Elzafon
Day 25: Greenwich Biosciences’ Epidiolex
Greenwich Biosciences is continually seeking solutions that transform the lives of those living with rare and severe neurological diseases. Included in their pipeline is Epidiolex— the first prescription formulation of CBD which is now an FDA approved therapy for rare and catastrophic forms of childhood-onset epilepsy.
Learn more: greenwichbiosciences.com
Day 26: Eisai
Eisai gives first thought to patients and their families, and to increasing the benefits health care provides.
Learn more: Eisai.com
Day 27: CHOC Children’s Neuroscience Institute
Our Friends at CHOC’s Neuroscience Institute understand the challenges families face when a child experiences seizures. Their Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions from the nation’s foremost epilepsy experts. Beyond managing seizures, they help families deal with nutrition, mental health, emotional needs, school assistance, and transitioning to adulthood and more.
Day 28: Brighter Future Charity
Brighter Future Charity is preparing individuals with autism to achieve desired level of independence in the workplace and in the community.
Day 29: TASK – Team of Advocates for Special Kids
Team of Advocates for Special Kids (TASK) is a nonprofit charitable organization whose mission is to enable individuals with disabilities to reach their maximum potential by providing them, their families and the professionals who serve them with training, support, information, resources and referrals, and by providing community awareness programs.
Disclaimer: The information shared in our ‘Virtual Epilepsy Recourse Village’ is provided in response to the cancellation of the 2019 Walk to End Epilepsy. All information shared is provided by the exhibitors that would have disseminated information onsite at the event. The Epilepsy Foundation of Greater Los Angeles is not affiliated with any of the organizations and companies and does not officially endorse or support any entity over another. We encourage each individual to contact the company and organization directly for more information.