Helpful Links

We've compiled a list of helpful links to other online resources to help family members and caregivers find additional support

Financial Assistance Programs

  • Federal Agencies and Resources, www.disabilityinfo.gov, connects people with disabilities, their family members, veterans, caregivers, employers, service providers and others with the resources they need to ensure that people with disabilities can fully participate in the workplace and in their communities.
  • Financial Help, www.ssa.gov, learn about eligibility rules and apply online for Social Security, Social Security Disability Insurance, Medicare and Medicaid.

Travel Resources

  • Air Charity Network, www.aircharitynetwork.org. Air Charity Network™ (ACN) provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis.
  • American Airlines Operation Lift-Off, www.operationliftoff.com. Their mission is to provide hope for courageous and frightened children with air transportation for a treatment trip. It is our goal to gain the resources necessary to provide air transportation for children with a life threatening illness. All documentation needed is on the webpage under Services/ Request a Trip.
  • Miracle Flights for Kids, www.miracleflights.org. Helping families overcome financial obstacles by flying their seriously ill children to receive proper medical care and to get second opinions.
  • Corporate Angel Network, www.corpangelnetwork.org. Provides free air transportation for cancer patients traveling to and from recognized treatment centers in the US without regard to their financial resources. Arranges for patients to use empty seats on corporate aircraft operating on business flights. (540 major corporate jets)
  • Mercy Medical Airlift (MMA), www.mercymedical.org. A non-profit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.
  • National Patient Travel Center, www.PatientTravel.org.Provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.
  • Southwest Airlines, www.southwest.com. Due to a significant increase in demand for tickets, Southwest Airlines has partnered with hospitals that have registered to participate in the medical transportation program. Each hospital is given tickets that they manage, with their own request requirements. Click on the link provided in the list for the procedures established by that hospital.

Education

  • CADRE, www.directionservice.org/cadre, the National Center on Dispute Resolution, encourages the use of mediation and other collaborative strategies to resolve disagreements about special education and early intervention programs.
  • Center for Law and Education, www.cleweb.org, strives to make the right of all students to quality education a reality throughout the nation and to help enable communities to address their own public education problems effectively, with an emphasis on assistance to low-income students and communities. For more than forty years, the Center for Law and Education has worked to bring about school- and district-wide change across the country in order to improve educational outcomes, particularly for low-income students. Legal information for parents and advocates about educational rights.
  • Federal Agencies and Resources, www.disabilityinfo.gov, connects people with disabilities, their family members, veterans, caregivers, employers, service providers and others with the resources they need to ensure that people with disabilities can fully participate in the workplace and in their communities.
  • Parent Advocacy Coalition for Educational Rights (PACER), www.pacer.org, is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

Epilepsy (And Related) Organizations & Associations

  • American Brain Tumor Association (ABTA), www.abta.org, provides critical funding to researchers working toward breakthroughs in brain tumor diagnosis, treatment and care, with the ultimate goal of finding a cure. The ABTA is also the recognized resource for comprehensive information and compassionate support for the brain tumor patients, families and caregivers who are living with this disease.
  • American Epilepsy Society, www.aesnet.org, is one of the oldest neurological professional organizations in this country and seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about adult and pediatric epilepsy.
  • Association for Behavioral & Cognitive Therapies (ABCT), www.abct.org, is an interdisciplinary organization committed to the advancement of a scientific approach to the understanding and amelioration of problems of the human condition.
  • Charlie Foundation to Help Cure Pediatric Epilepsy, www.charliefoundation.org, was founded in 1994 after twenty month old Charlie Abrahams, having endured multiple daily seizures, and failed every available anti-convulsant drug and one brain surgery, was cured of his epilepsy by the ketogenic diet at Johns Hopkins Hospital. The diet was undertaken despite resistance from the five pediatric neurologists he had seen.
  • CureEpilepsy, www.cureepilepsy.org, is a non profit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.
  • Epilepsy Foundation of America®, www.epilepsyfoundation.org, is the national voluntary agency dedicated solely to the welfare of the almost 3 million people with epilepsy in the U.S. and their families. 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.
  • Epilepsy Therapy Project, www.epilepsy.com, is a 501 (c) (3) not-for-profit corporation dedicated to a singular focus: overcoming the funding gaps and roadblocks that slow the progress of new therapies from the lab to the patient. Epilepsy Therapy Project seeks to improve incentives and encourage commercial investment in new therapies. Acting as both a catalyst and clearing house for innovative research and the early commercialization of new therapies, the Epilepsy Therapy Project brings together financial resources, scientific insights and business expertise from leading academic and commercial industry participants
  • Intractable Childhood Epilepsy Alliance, www.ice-epilepsy.org, is committed to facilitating the understanding of the root cause of the epilepsies and avenues to better treatment and ultimately a cure.
  • International League Against Epilepsy, www.ilae-epilepsy.org, is the world's preeminent association of physicians and other health professionals working towards a world where no persons' life is limited by Epilepsy.
  • LGS Foundation, www.lgsfoundation.org is a non-profit organization dedicated to providing support and information about Lennox-Gastaut syndrome while raising funds to help pursue additional research and services for LGS families.
  • National Association of Epilepsy Centers (NAEC), www.naec-epilepsy.org, is a non-profit 501c6 trade association with a membership of more than 100 specialized epilepsy centers in the United States. Founded in 1987 by physician-leaders committed to setting a national agenda for quality epilepsy care, NAEC educates public and private policymakers and regulators about appropriate patient care standards, reimbursement and medical services policies.
  • National Organization for Rare Disorders (NORD), www.rarediseases.org, The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
  • People Against Childhood Epilepsy (PACE),www.paceusa.org, is a 501(c)3 not for profit corporation formed in 1996 to battle this devastating and far-reaching disease. It was founded by a group of parents in response to their experiences in caring for the medical, physical, social, educational, developmental and emotional needs of their children who suffer from epilepsy and severe seizure disorders.
  • Rare Epilpesy Network (REN), https://ren.rti.org/,  is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research.

Government

  • Centers for Disease Control and Prevention, www.cdc.gov/epilepsy to effectively address public health issues related to epilepsy to improve the health of people living with epilepsy, especially those at greater risk for health disparities; improve their quality of life; and decrease the stigma associated with this condition.
  • Epilepsy Phenome/Genome Project, www.epgp.org, is a research study funded by the National Institutes of Neurological Disorders and Stroke. The goals are to better understand what causes epilepsy, why some families have several people with epilepsy, and how we can better predict which anti-seizure medications (or no medication) will work best for an individual.
  • Federal Agencies and Resources, www.disabilityinfo.gov, connects people with disabilities, their family members, veterans, caregivers, employers, service providers and others with the resources they need to ensure that people with disabilities can fully participate in the workplace and in their communities.
  • National Institute of Health, www.nih.gov, is a part of the U.S. Department of Health and Human Services and is the primary Federal agency for conducting and supporting medical research. Helping to lead the way toward important medical discoveries that improve people's health and save lives, NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases. Composed of 27 Institutes and Centers, the NIH provides leadership and financial support to researchers in every state and throughout the world.
  • National Institute of Neurological Disorders and Stroke, www.ninds.nih.gov/research/epilepsyweb/, is one of the 27 Institutes and Centers that are a part of NIH (National Institute of Health). NINDS is where research for epilepsy is conducted at the federal level.

Other

  • SeizureTracker, https://www.seizuretracker.com is dedicated to providing people living with epilepsy and their doctors with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic medications.