My Resource Hub

patient neurology

Your destination for a wide range of treatment-resistant epilepsy support

Although treatment-resistant epilepsies are rare, there are a growing number of resources helpful for these conditions. To make it easier to access, we've organized this information in one central and convenient location.

To personalize your experience, please select your condition of interest and state of residence.


To go directly to a section, click below:

Federal and State Programs

There are federal and state programs that may help with access to education, financial assistance, and home healthcare services. If you don’t qualify for Medicaid or Social Security Disability Insurance (SSDI) benefits, you can apply for a state waiver to get you the support you need. To take one more thing off your plate, we’ve put some helpful links all in one place.


Federal programs include Individualized Education Program (IEP), Medicaid, Supplemental Security Insurance (SSI), and Social Security Disability Insurance (SSDI). Select a program below to learn more.


State resources and links listed here include the Home and Community-Based Services (HCBS) 1915c Waiver Program and the National Academy for State Health Policy (NASHP) website.

Through the Home and Community-Based Services (HCBS) 1915c Waiver Program, a state can help people who need long-term services and support (LTSS) and are Medicaid-eligible by supporting and designing its HCBS services based on their needs. Waivers vary from state to state, and many states offer more than one type of 1915(c) waiver.

Select a program below to learn more.

Find a Center

Visit the National Association of Epilepsy Centers (NAEC) website to find an accredited epilepsy center in your area.


The National Academy for State Health Policy (NASHP) works with states to improve systems of care for children and youth with special health care needs and their families. Their focus is on improving coverage, access, and continuity of care and integrating public health, education, behavioral health, social services, and long-term services and supports to better serve these young people and improve health outcomes.


Variety is a charity that focuses on multiple unmet needs of children who are sick, disadvantaged or live with disabilities and other special needs at a local, national and international level. Local chapters offer various services, from recreational events to specialized medical and leisure equipment. Link to their North America page to select the region closest to you and to learn more about each chapter.


Rare Epilepsies

This section provides a brief description of several rare and severe epilepsies and their associated risks, such as Sudden Unexpected Death in Epilepsy (SUDEP). Click on a tab below to learn more. If your condition is outside those listed here, consider visiting for more information.

About Dravet Syndrome, Lennox-Gastaut Syndrome, Tuberous Sclerosis Complex, and Infantile Spasms

Dravet syndrome, Lennox-Gastaut syndrome, Tuberous Sclerosis Complex, and Infantile Spasms are rare conditions that may begin in infancy or early childhood.1-4 DS, LGS, and IS are types of epilepsies.1,2,4 TSC causes tumors that may lead to epileptic seizures.3 While those conditions may be difficult to diagnose, early diagnosis can help create effective treatment plans and reduce seizures that can contribute to long-term issues.3,5-6

Epilepsy can be inherited or due to a unique mutation (de novo). Genetic testing may help doctors determine which specific kind of epilepsy a person has.3-5


  1. Dravet C. The core Dravet syndrome phenotype. Epilepsia. 2011;52(Suppl 2):3-9.1.
  2. Arzimanoglou A, French J, Blume WT, et al. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology. Lancet Neurol. 2009;8:82-93.
  3. Kingswood JC, d’Augères GB, Belousova E, et al. TuberOus SClerosis registry to increase disease Awareness (TOSCA) – baseline data on 2093 patients. Orphanet Journal of Rare Diseases. 2017;12:1-13.
  4. Go CY, Mackay MT, Weiss SK, et al. Evidence-based guideline update: Medical treatment of infantile spasms. Neurolog. 2012;78(24):1974-1980.
  5. Arzimanoglou A, Resnick T. All children who experience epileptic falls do not necessarily have Lennox-Gastaut syndrome…but many do. Epileptic Disord. 2011;13:S3-S13.
  6. van Dam V, Korff CM. Dravet syndrome: an update. Swiss Arch Neurol Psychiatry. 2013;164(5):153-157.

About Dravet Syndrome

What is it?

Dravet syndrome (DS) is a rare, treatment-resistant and severe type of epilepsy that typically begins within the first year of life with frequent and/or prolonged seizures.1,2

Who gets it?

Features of DS

  • Recurrent and prolonged seizures (tonic-clonic, hemiconvulsive, myoclonic)2
  • Seizures typically begin in the first year of life1
  • High body temperature, often associated with illness or fever following vaccinations, triggers seizures1,2
  • Additional neurological issues (cognitive, crouched gait, low muscle tone, and eye coordination) usually appear between 1 to 5 years2,4
Dravet Foundation

To learn more about Dravet syndrome,
visit the Dravet Syndrome Foundation website

The mission of Dravet Syndrome Foundation is to aggressively raise research funds for DS and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.



  1. van Dam VS, Korff CM. Dravet syndrome: an update. Swiss Arch Neurol Psychiatry. 2013;164(5):153-157.
  2. Dravet C. The core Dravet syndrome phenotype. Epilepsia. 2011;52(Suppl 2):3-9.
  3. Dravet C, Bureau M, Oguni H, Fukuyama Y, Cokar O. Severe myoclonic epilepsy in infancy: Dravet syndrome. In: Roger J, Bureau M, Dravet C, et al, eds. Epileptic Syndromes in Infancy, Childhood and Adolescence. Montrouge, France: John Libbey Eurotext Ltd.; 2005:89-113.
  4. Wirrell EC. Treatment of Dravet syndrome. Can J of Neurol Sci. 2016;43:S13-S18.

About Lennox-Gastaut Syndrome

What is it?

Lennox-Gastaut syndrome (LGS) is a type of epilepsy with multiple kinds of seizures, including tonic (stiffening) and atonic (loss of muscle tone), as well as others. Drop seizures occur in at least 50% of patients1-3

Who gets it?

Features of LGS

  • Typically occurs between 2 to 8 years of age2,3,7
  • Frequent, sometimes daily seizures which may interfere with how the brain works7-12
  • Most LGS seizures are tonic and occur while sleeping2,5,9
  • Cognitive impairment, developmental delays, and behavioral problems2,3
  • A characteristic pattern on EEG (a test that measures and records brain waves), called slow spike-wave complexes2,3,5
  • 80%-90% of children diagnosed with LGS will continue having seizures into their adult years3,7,9

To learn more about LGS, visit the LGS Foundation website

LGS Foundation

The LGS Foundation’s mission is to improve the lives of individuals affected by LGS through research, programs and education.



  1. Chevrie JJ, Aicardi J. Childhood epileptic encephalopathy with slow spike-wave: a statistical study of 80 cases. Epilepsia. 1972;13:259-271.
  2. Arzimanoglou A, French J, Blume WT, et al. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology. Lancet Neurol. 2009;8:82-93.
  3. Bourgeois BFD, Douglass LM, Sankar R. Lennox-Gastaut syndrome: a consensus approach to differential diagnosis. Epilepsia. 2014;55(Suppl 4):4-9.
  4. Trevathan E, Murphy CC, Yeargin-Allsopp M. Prevalence and descriptive epidemiology of Lennox-Gastaut syndrome among Atlanta children. Epilepsia. 1997;38:1283-1288.
  5. Arzimanoglou A, Resnick T. All children who experience epileptic falls do not necessarily have Lennox-Gastaut syndrome…but many do. Epileptic Disord. 2011;13:S3-S13.
  6. Markand ON. Slow spike-wave activity in EEG and associated clinical features: often called “Lennox” or “Lennox-Gastaut” syndrome. Neurology. 1977;27:746-757.
  7. van Rijckevorsel K. Treatment of Lennox-Gastaut syndrome: overview and recent findings. Neuropsychiatr Dis Treat. 2008;4:1001-1019.
  8. Borggraefe I, Noachtar S. Pharmacotherapy of seizures associated with Lennox-Gastaut syndrome. Clin Med Insights Ther. 2010;2:15-24.
  9. Panayiotopoulos C. Epileptic encephalopathies in infancy and early childhood in which the epileptiform abnormalities may contribute to progressive dysfunction. In: The Epilepsies: Seizures, Syndromes and Management. Oxfordshire, UK: Blandon Medical Publishing; 2005:137-206.
  10. Oguni H, Hayashi K, Osawa M. Long-term prognosis of Lennox-Gastaut syndrome. Epilepsia. 1996;37(Suppl 3):44-47.
  11. Kerr M, Kluger G, Philip S. Evolution and management of Lennox-Gastaut syndrome through adolescence and into adulthood: are seizures always the primary issue? Epileptic Disord. 2011;13(Suppl 1):S15-S26.
  12. Piña-Garza JE, Chung S, Montouris GD, Radtke RA, Resnick T, Wechsler RT. Challenges in identifying Lennox-Gastaut syndrome in adults: a case series illustrating its changing nature. Epilepsy Behav Case Rep. 2016;5:38-43.

About Tuberous Sclerosis Complex

What is it?

Tuberous Sclerosis Complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs.1 Seizures of many types may occur, including infantile spasms, tonic-clonic seizures, tonic, akinetic, and myoclonic.2

Who gets it?

Features of TSC

  • Seizures occur in 80% of individuals with TSC3
  • Non-cancerous tumors in the brain2
  • Non-cancerous fatty tumors are found in over 80% of patients with TSC (most commonly in the liver, but can occur in other organs)1
  • Changes to the skin, including lesions, leathery patches and white spots2
  • Lesions involving the retina1
  • Cardiac tumors1
  • Lung disease in up to 40% of women with TSC1
Tuberous Sclerosis Alliance

To learn more about Tuberous Sclerosis Complex, visit the Tuberous Sclerosis Alliance website

The Tuberous Sclerosis Alliance is dedicated to finding a cure for TSC while improving the lives of those affected.



  1. Northrup H, Krueger DA, on behalf of the International Tuberous Sclerosis Complex Consensus Group. Tuberous sclerosis complex diagnostic criteria update: recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatr Neurol. 2013;49(4):243-254.
  2. NIH National Institute of Neurologic Disorders and Stroke. Tuberous Sclerosis Fact Sheet. Accessed March 21, 2018.
  3. Kingswood JC, d’Augères GB, Belousova E, et al. TuberOus SClerosis registry to increase disease Awareness (TOSCA) – baseline data on 2093 patients. Orphanet Journal of Rare Diseases. 2017;12(2):1-13.

About Infantile Spasms

What is it?

Infantile Spasms, also called IS, is rare epilepsy-related seizure disorder seen in early infancy. The average age of onset is under the age of 1, and about one fourth of infants with this disorder will stop having seizures within 1 year of their first seizure.1-5

The most frequent type of spasms associated with this disorder can be repetitive, often subtle, movements of the neck, upper body, arms and legs, that are balanced on both the left and right sides of the body.1

They can occur in clusters, or not very spaced out, but rarely occur during sleep.1

The locations of these spasms and their intensity can vary greatly.1

Parents and caregivers are encouraged to take video to record any suspected symptoms to share with their physician.

To watch video examples, visit the Child Neurology Foundation Website

Who gets it?

Features of IS

  • Can be hard to diagnose because it is challenging to tell a spasm from normal infant movement1
  • Infants between 3 and 10 months of age are often diagnosed after they are observed having 1-second long jerking head and arm spasms or head bobbing7
  • Often accompanied by developmental delays if left untreated7
  • 1-7% of cases occur in infants with a family history of epilepsy1
  • The disorder can be categorized as epileptic spasms that most often happen upon awakening7
  • Nearly 50% of children with IS also have a prenatal cause such as Tuberous Sclerosis Complex (TSC)3
  • Patients with infantile spasms will have abnormal patterns on an electroencephalogram or EEG1
Infantile Spasms Action Network

The Infantile Spasms Action Network (ISAN) is a collaborative network of 20+ national and international entities dedicated to raising awareness of Infantile Spasms. ISAN developed the STOP Infantile Spasms mnemonic to raise awareness about the importance of knowing the signs to 'STOP' Infantile Spasms

Stop Infantile Spasms

Infantile Spasms Awareness Week (ISAW) is held annually from December 1-7, while awareness and education efforts continue year-round


Child Neurology Foundation

To learn more about Infantile Spasms, visit the Child Neurology Foundation website

The mission of the Child Neurology Foundation is to serve as a collaborative center of education and support for caregivers and their children with neurologic conditions.



  1. Hrachovy RA, Frost JD Jr. Infantile spasms. Handb Clin Neurol. 2013;111:611-618.
  2. Go CY, Mackay MT, Weiss SK, et al. Evidence-based guideline update: Medical treatment of infantile spasms. Neurolog. 2012;78:1974-1980.
  3. Pellock JM, Hrachovy R, Shinnar S, et al. Infantile spasms: A US consensus report. Epilepsia.2010;51:2175-2189.
  4. Hattori H. Spontaneous remission of spasms in West syndrome: implications of viral infection. Brain Dev. 2001;23:705-707.
  5. Hrachovy RA, Glaze DG, Frost JD Jr. A retrospective study of spontaneous remission and long-term outcome in patients with infantile spasms. Epilepsia. 1991;32:212-214.
  6. Martin JA, Hamilton BE, Osterman MJK, Driscoll AK, Drake P. National Vital Statistics Reports. Births: Final Data for 2016. DHHS. 2018;66:1-25.
  7. Kossoff EH. Infantile spasms. Neurologist. 2010;16:69-75.


What is it?

SUDEP—or Sudden Unexpected Death in Epilepsy—is the most common epilepsy-related cause of death. And just as its name states, deaths due to SUDEP are unexpected and occur in individuals with epilepsy who are otherwise healthy.1,2

In SUDEP cases, no other cause of death can be found, and the death is not known to be related to an accident or seizure emergency such as status epilepticus.2

There remains a lot that is unknown about SUDEP, including its cause. Research is currently being done to better define and understand it.

We do know that SUDEP happens more often at night and may occur when there are problems with breathing, heartbeat, and brain function after a seizure.2,3

Who is affected?

The greatest risk factors for SUDEP include uncontrolled or refractory epilepsy and tonic-clonic (or grand mal) seizures.1

Other risk factors are thought to exist, some of which include1:

  • Not taking medications regularly or as prescribed
  • Stopping or changing medications suddenly
  • Being a young adult (20-40 years)
  • Having an intellectual disability (IQ<70)
  • Seizures that happen during sleep
  • Onset of epilepsy at a young age

How can you reduce the risk?

It’s important to understand that the risk of SUDEP isn’t the same for everyone.

Because of this, it’s crucial that you talk to your doctor to determine your risk for SUDEP and find the best ways to manage your risk.

The best way to reduce the risk of SUDEP is to have as few seizures as possible. There are additional suggestions that your doctor may provide1,3:

  • Take seizure medications regularly and at the right dose
  • Know what triggers your or your loved one’s seizures and adjust lifestyle and/or environment to avoid them
  • Getting enough sleep
  • Keeping stress levels low
  • Be Seizure Safe by learning seizure first aid
  • Track your seizures in a diary that you can share with your doctor to develop and help optimize your treatment plan
  • Since SUDEP occurs most often during sleep, consider a seizure-detection device that can work throughout the night, detecting certain seizures and alerting you to take action


To find more information on SUDEP, you can start the conversation with your doctor. You can also take advantage of other helpful resources, including non-profit organizations and fellow caregivers who have first-hand experience with SUDEP.

1. Talk to your doctor

The SUDEP Institute, together with the Epilepsy Foundation, has put together an informational page about why SUDEP is so difficult to talk about, and how you can bring up this difficult topic with your healthcare provider.


2. Visit the organizations devoted to researching, advocating, and ultimately preventing SUDEP

The SUDEP Institute: Offers a wealth of information, tools, and support for people seeking to learn more about SUDEP, including links to relevant webinars, helpful infographics, and free downloadable brochures.

#AimForZero: An initiative from the Epilepsy Foundation that strives toward a future free of SUDEP by encouraging people who live with epilepsy to prevent seizures and reduce their risk for SUDEP.


The Danny Did Foundation: Committed to advancing public awareness of SUDEP, improving communication between medical professionals and families regarding SUDEP, and uncovering more and better ways to prevent seizure-related deaths. The Danny Did Grant Program also provides financial support to families who need help paying for medical and seizure-management devices.


The Child Neurology Foundation (CNF): Supports families affected by neurological disorders as they navigate the journey from diagnosis to management to long-term care. The CNF has a robust page devoted to SUDEP resources, including a valuable webinar called “Let’s Talk About SUDEP: A Conversation With Parents and Doctors.”


3. Hear stories from other families close to the cause

Sally Schaeffer tragically lost her daughter Lydia to SUDEP on Mother’s Day in 2014. Since then, Sally has become Director of the SUDEP Institute and has made it her mission to eradicate SUDEP once and for all.



After losing his son to SUDEP, Mike and his wife founded the Danny Did Foundation in an effort to help every family who can benefit from a seizure-detection device gain access to one.



  1. Devinsky O. Sudden, unexpected death in epilepsy. N Engl J Med. 2011;365:1801-1811.
  2. Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-1031.
  3. Lamberts RJ, Thijs RD, Laffan A, Langan Y, Sander JW. Sudden unexpected death in epilepsy: people with nocturnal seizures may be at highest risk. Epilepsia. 2012;53(2):253-257.
  4. Harden C, Tomson T, Gloss D, et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2017;88(17):1674-1680.


Below are links to helpful resources for those living with conditions such as treatment-resistant epilepsy. They include service animals and camps where people can receive extra attention in a supportive environment. Explore these resources to see what they might offer you, and check back often as we add to the list.

These organizations have information and resources that may be helpful to patients and caregivers. Visit their websites to see how they may be useful to you.

Mission: To serve as a collaborative center of education and support for caregivers and their children with neurologic conditions.


Mission: To aggressively raise research funds for DS and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.


Mission: To cure epilepsy, transforming and saving millions of lives. We identify and fund cutting-edge research, challenging scientists worldwide to collaborate and innovate in pursuit of this goal.


Mission: To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.


Mission: To improve the lives of individuals affected by LGS through research, programs and education.


Mission: The Tuberous Sclerosis Alliance is dedicated to finding a cure for TSC while improving the lives of those affected.


4 Paws for Ability is a 501(c)(3) non-profit organization that enriches the lives of children with disabilities by the training and placement of quality, task-trained service dogs to provide increased independence for the children and assistance to their families.

General information about the application and selection process

Who can apply? Any child with a disability. We believe service dogs should be made available to any child with a disability who wishes to have the love, companionship, and independence that result from placement with a service dog.

Other eligibility information

Acceptance into the program requires that the necessary service dog training is within our scope of expertise, that the home is a safe for the placed service dog, and the family is able to financially care for the dog.

In rare situations, they cannot accept a child into the program. Reasons may include training needs outside our area of expertise or concern about the success or safety of the service dog team. Again, it is rare that they are unable to assist child applicants. Eligibility questions or concerns can be directed to


Little Angels Service Dogs is 501c3 nonprofit organization of trainers and volunteers who work to provide highly trained dogs to assist disabled children and adults throughout the United States.

Is a Little Angels Seizure Assistance & Alert Dog Right for Me?

In order to receive a Seizure Assistance & Alert Dog from Little Angels, you must:

  • Have seizures more than twice a month on average in order for the dog to experience them often enough to learn and recognize them.
  • Have strong communication skills and the ability to be consistent with a dog regarding training exercises.
  • Have a love for dogs.
  • Have patience to work through problems (even a trained dog is still a dog).
  • Have finances to provide your dog with veterinary care and maintenance for the next 10-12 years.
  • Be willing to travel to San Diego, California for Handler Training, preferably with a friend or family member for support.

Little Angels places dogs to assist children and adults. Disabled recipients who are not able to be consistent to reinforce the dog's training will require a handler (facilitator) to care for the dog and issue commands to the dog for the assistance of the disabled party. Because of this, there is not necessarily an age requirement for the disabled party. Dogs can even alert to seizures in an infant as long as the parent is consistent with training reinforcement.

Applying for a Little Angels Service Dog is a multi-step process which takes an average of one to two months to complete.


Paws With A Cause® enhances the independence and quality of life for people with disabilities nationally through custom-trained Assistance Dogs. PAWS® increases awareness of the rights and roles of Assistance Dog Teams through education and advocacy.

General information about the application and selection process

PAWS has an annual application request time period for all first-time applicants. Application requests will be available April 1-June 30 of each year.

  • During this time you will be able to request an application to receive a Service Dog to help with physical disabilities, a Hearing Dog to alert to common environmental sounds, a Seizure Response Dog to aid you during or after your seizures, and Service Dogs for Children with Autism.
  • Please check the website for the qualifications to receive each type of Assistance Dog and for additional program requirements.
  • Please be aware that in order for PAWS to place an Assistance Dog with you, we must have a local Field Representative in your area and that coverage is subject to change at any time.

The information provided about these organizations is from their respective websites. For complete details please visit their websites by clicking Learn More.

The Hole in the Wall Gang Camp is dedicated to providing “a different kind of healing” to seriously ill children and their families, free of charge. We are a community that celebrates the spirit of childhood, the sound of laughter, and the feeling of endless possibility.


Epilepsy Foundation camps are located throughout the country. Most programs are one week and offer scholarships based on financial need. Contact your local Epilepsy Foundation or search on the Epilepsy & Seizures Helpline Resources page for information about a camp near you.


Camp Blackhawk: Week-Long Retreat for Kids & Teens with Epilepsy

The Epilepsy Foundation of Greater Chicago’s Camp Blackhawk offers a FREE, one-week summer camp for kids and teens from ages 6-17. Campers get to experience fun activities in a fully supportive environment alongside other young people who are living with epilepsy. Campers are assigned a case manager who gets to know each child and their individual needs.


Since 1996, Camp Boggy Creek has made it possible for children with serious illnesses to enjoy a camp experience in a safe, medically-sound environment. Located just a short drive from Orlando, Florida, the 232-acre camp serves children ages 7-16 who've been diagnosed with chronic or life-threatening conditions.


The information provided about these organizations is from their respective websites. For complete details please visit their websites by clicking Learn More.

Give Kids The World Village is an 84-acre, nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families.

The Village and its community partners provide children and their families accommodations in fully-furnished villas, transportation, tickets to theme parks, meals, daily entertainment and much more.


Located in San Antonio, Texas, Morgan's Wonderland provides a safe, clean and beautiful environment free of physical and economic barriers that all individuals – regardless of age, special need or disability – can come to and enjoy.

When it celebrated its grand opening April 10, 2010, Morgan's Wonderland became the world's first theme park designed with special-needs individuals in mind and built for everyone's enjoyment. The completely wheelchair-accessible park features more than 25 elements including rides, playgrounds and other colorful attractions. From the very beginning, anyone with a special need has been admitted free of charge, no questions asked.


Child Neurology Foundation has information and resources that may be helpful to patients and caregivers. Visit the Child Neurology Foundation's website to learn more about this program.

Child Neurology Foundation

Family Support and Empowerment Program (FSEP)

FSEP offers a connection with trained and mentored Peer Support Specialists, who are parents of children and adolescents with neurologic conditions. They offer unique emotional support, as only someone who has walked a similar journey can provide. They empower families by sharing information and trusted resources.

We are here to listen and help. We have been there. We are parents, like you.


For people with epilepsy, EGI is a place where you can have your genetic data (your exome) analyzed and reanalyzed in an effort to find the cause of your epilepsy.

Not everyone has a genetic cause of their epilepsy, but some people do. Finding the cause could one day help to find the best treatments and ultimately a cure.


  • Anyone who has been diagnosed with epilepsy and has had exome testing done can enroll in EGI
  • Before you decide whether to participate in any clinical research study, you should take time to educate yourself and to become familiar with how medical research works, what may or may not be expected of you and what the potential risks and benefits of participating may be. See our About Medical Research section for more information

Beyond Batten Disease Foundation was established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure.

In the fall of 2008, Beyond Batten Disease Foundation founder Craig Benson and founding director, Mark Chandler, PhD, approached National Center for Genome Resources researchers Stephen Kingsmore and Callum Bell with a challenge: to create a precise, inexpensive, genetic test capable of detecting hundreds of devastating genetic diseases, one that could be made widely available to prevent the emotional and financial consequences associated with lengthy diagnostic odysseys.

The development team has since moved to Children's Mercy Hospital (CMH) in Kansas City where the test, now named "TaGSCAN" (for Targeted Gene Sequencing and Custom Analysis) has been clinically validated to identify 750 devastating rare diseases.

The test is now available and can be ordered by any qualified physician who suspects his or her patient has a genetic illness.



There are grants available for children and others living with rare medical conditions that offer financial assistance with necessities such as medical equipment, service dogs, travel expenses, speech therapists, and other medical, therapeutic, and living expenses. Explore these grants to see which ones might meet your specific needs, and check back as we continue to update this list.

The Chelsea Hutchison Foundation serves individuals, families, and communities affected by epilepsy by raising awareness of the common yet little-known condition, sudden unexpected death in epilepsy (SUDEP), by providing support and equipment for prevention of this occurrence, and by creating a safe space and raising awareness within the greater community. They raise funds to provide education about SUDEP and to provide seizure response dog grants and movement monitors that help to protect against SUDEP.


The Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of sudden unexpected death in epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths. We view these devices as complimentary to medicinal, surgical, and dietary measures that are used to treat seizures. DANNY DID GRANT PROGRAM: For certain resources, the Danny Did Foundation provides financial assistance for qualified individuals who require financial support.


The Dravet Syndrome Foundation includes a listing of national and state-by-state Funding Agencies that offer grants to families to defer conference travel expenses.


Joyful Journey Mom is a blog site that includes an extensive list of grants and resources for families with special needs. Note: not all grants listed at the link below will be applicable to this community.


Morgan Amelia Foundation is a 501c(3) nonprofit charity, founded in 2013, that provides medical necessities to children with Dravet syndrome. To learn more:


Founded and incorporated in February 2007, Lili’s Lift is a 501(c)3 not-for-profit organization that seeks to empower and assist children with disabilities (as well as their families, friends, and communities) through education, advocacy, and volunteer opportunities. They provide capital, building materials, and in-kind donations necessary to achieve one-time home renovation projects that will significantly assist children with disabilities and their families.


The My Gym Challenged America Foundation (MGCA) is the registered 501(c)(3) charitable division of My Gym Children’s Fitness Center, a worldwide organization dedicated to helping children 6 weeks through 10 years of age develop physically, cognitively and emotionally. With hundreds of locations in more than 30 countries, My Gym offers structured, age-appropriate weekly classes that incorporate music, dance, relays, games, gymnastics, sports and more active and rewarding lives.


The information provided about these organizations is from their respective websites. For complete details please visit their websites by clicking Learn More.

Caregiver Tools

Parents and caregivers may use these forms to collect and record all vital information about patients, including patient data, medications, dosage, treatment protocol, emergency contacts, doctors/nurses, and hospital information.


This sheet is meant to be used in clinical settings to convey vital information about the patient in one convenient place. Information includes name, age, condition, medications and treatments, including contraindicated medications, allergies, and important contacts.

Download Face Sheet


This plan is for anyone who interacts with the patient, from caregivers and aides to emergency medical personnel and hospital staff. It provides detailed instructions on what to do when the patient is experiencing a seizure, from which medications to use to how to physically handle the patient.

Download Acute Seizure Management Plan


This fully comprehensive medication sheet allows multiple caregivers/health professionals to record exact details regarding the administration of medications and treatments for each day of the month. It includes signature confirmations to ensure compliance. An additional sheet is included to help ensure consistency amongst multiple caregivers (e.g., home healthcare).

Download Medication Administration Record


This is a convenient, portable document that can be used by caregivers to see the patient’s medications at a glance. Can be carried around in a purse or wallet.

Download Medication Schedule

Here are additional Caregiver Tools that you may find useful:

Epilepsy Seizure Diary Epilepsy Seizure Tracker™