As with any condition, knowledge is not only empowering, but will help you cope with your epilepsy or psychogenic non-epileptic seizures (PNES). Below is a compilation of resources. Some are specific for Colorado, some are nation-wide. If you know of an organization, resource, blog you would like to add, please feel free to email the Rocky Mountain Center for Epilepsy and we will add your information.
Colorado Epilepsy Resources
The Epilepsy Foundation of Colorado is a non-profit organization leading the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.
Seizure360 is a Colorado-based 501(c)(3) non-profit public charity for those who deal with seizures. Seizure 360’s main goal is to start support groups around the country, provide financial assistance for medical bills and other health options and provide opportunities for work for those who are having trouble finding jobs because of this disorder.
Seize the world a Denver, CO based charity empowers people with seizures to lead active and fulfilling lives through community–based programs that raise public awareness of epilepsy.
The Chelsea Hutchison Foundation is a Colorado non-profit corporation formed by Julie and Doug Hutchison to provide help and support to individuals, particularly children and young adults, who have epilepsy. CHF raises awareness about Sudden Unexplained Death in Epilepsy (SUDEP) and provides trained seizure-response dogs as well as Emfit and SmartWatch monitors to people with epilepsy.
Outdoor Mindset a Boulder, CO based organization with the mission to unite and inspire people affected by neurological challenges through a common passion for the outdoors. Outdoor Mindset connects people through a membership community, providing one-on-one inspiration through their Guide program.
Nationwide Epilepsy Resources
MyEpilepsyTeam is a social network and online support group for people who are living with epilepsy. MyEpilepsyTeam gives you the easiest way to find the best team of providers and peers who are living with epilepsy. Share with others like you, and learn from their experience.
The Epilepsy Foundation, a national non-profit with more than 47 affiliated organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The Foundation works to prevent, control and cure epilepsy through community services; public education; federal and local advocacy; and supporting research into new treatments and therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential.
The Charlie Foundation for Ketogenic Therapies was founded in 1994 to provide information about diet therapies for people with epilepsy, other neurological disorders and tumorous cancers. The foundation is a great resource for everything related to the Ketogenic Diet.
The Epilepsy Network (TEN) is a worldwide community of people with epilepsy, family and friends, uniting to talk about their experiences. Learn facts and information about epilepsy. Ask questions and get points of view regarding epilepsy and so much more.
The Epilepsy Foundation provides a list of all the anti-seizure medication. Click here to read more.
Citizens United for Research is the leading nongovernmental agency fully committed to funding research in epilepsy. The organization was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. Unwilling to sit back, they joined forces to spearhead the search for a cure.
Psychogenic non-epileptic Seizure Resources
Psychogenic non-epileptic seizures is a great website by the North east Region Epilepsy Group providing guidance and support to individuals with PNES.
Are you ready to take the first step toward a seizure free life?