Collaboration & Advocacy for families living with Rare Chromosome Disorder

Collaboration & Advocacy for families living with Rare Chromosome Disorder

IDIC15 Canada is a New Canadian non-profit organization which provides Collaboration, Advocacy and Research to families living with Idic15 and it’s variants otherwise known as Chromosome 15q11-13 Duplication Syndrome. This organization is born from the need to advance medical resources and awareness in Canada.

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PAME Conference

PAME Conference

This 3-day learning event is the first Partners Against Mortality in Epilepsy (PAME) conference devoted predominantly to Sudden Unexpected Death In Epilepsy (SUDEP), where clinical, basic science and patient/family attendees will come together to understand and support each other.

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FDA Approves ONFI™ (clobazam)

FDA Approves ONFI™ (clobazam)

“As an epileptologist treating patients with a variety of challenging seizure disorders, I’m aware of the need for new add-on therapies to address the severe and frequent seizures associated with LGS,” said Joan A. Conry, MD, professor of neurology at Children’s National Medical Center in Washington, D.C., and a principal investigator of the CONTAIN Trial. “Clobazam, now approved as ONFI, was shown to be effective as adjunctive therapy for reducing seizures associated with LGS,1 and its upcoming availability provides hope for additional seizure management to patients and their physicians, caregivers and families.”

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Can Transplanted Neuronal Progenitor Cells Develop into Functioning Neurons

Epilepsy research is reaching beyond improving the means for quelling symptoms to the exploration of potential modalities for correcting or reversing alterations in neural function that underlay some forms of the disorder. In research reported at the 64th American Epilepsy Society (AES) Annual Meeting, investigators at the University of Florida have demonstrated that adult human neuronal progenitor cells (AHNPs) generate functional neurons that integrate into host neuronal networks in the cerebral cortex.

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Vision 20/20 Task Force

Vision 20/20 Task Force

ICE Epilepsy Alliance is a member of the American Epilepsy Society’s Vision 20/20 Task Force, a group of advocacy groups committed to improve the lives of patients with epilepsy. At the request of the Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and Vision 20/20 the Institute of Medicine will convene an ad hoc committee to reco

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Differentiating Seizures: A Chart

Differentiating Seizures: A Chart

A link to a downloadable chart that helps parents and doctors to differentiate SCN1A related seisures, Epilepsy, and Epilepsy Syndromes from Pediatric Epileptic Encephalopathies with Similar Clinical Features.

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Ion Channel Epilepsies

Ion Channel Epilepsies

A downloadable PDF At the end of the presentation, participants should be able to: Describe what is intractable childhood epilepsy Understand the mutations that occur to the ion channels Explain the benefits of genetic testing

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Seizure Alert Dogs

Seizure Alert Dogs

As many studies have concluded, alert and assist dogs can be beneficial for people with epilepsy. Alert and assist dogs range from assisting a person in day to day life, alerting when a person has a seizure, to even prediction an upcoming seizure. Although it must be noted a dog cannot be trained to predict seizures, it does occur, and through training dogs can be used to alert upon seizures, and even call for emergency services.  And with the American Disability Act, these dogs are allowed in public places, stores, and other venues where...

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Clinical Trials in Children with Intractable Epilepsy

Clinical Trials in Children with Intractable Epilepsy

Clinical trials are conducted to allow safety and efficacy data to be collected for health interventions (e.g., drugs, diagnostics, devices, therapy protocols). These trials can take place only after satisfactory information has been gathered on the quality of the non-clinical safety, and Health Authority/Ethics Committee approval is granted in the country where the trial is taking place.

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My Child Has Epilepsy – What Next?

My Child Has Epilepsy – What Next?

Advocate to maximize seizure control while balancing medication side effects - this is hard in drug resistant or intractable epilepsy.

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When to See a Child Neurologist

When to See a Child Neurologist

It is important that a child is diagnosed and treated for epilepsy appropriately and the seizures are controlled as well as possible. In certain syndromes such as Infantile spasms, B-6 dependent seizures, and Dravet syndrome, early aggressive treatment may change the course of illness.

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Have Hope

Have Hope

ICE Alliance – Have Hope for Intractable Epilepsies in Children Together we will Improve the Outcome and Reach for the Cure. Epilepsy is a condition where recurrent electrical discharges in the brain disturb the normal functioning of the nervous system.  These episodes of disturbance are called seizures.  Two or more unprovoked (caused by fever or nervous system infection) seizures typically leads to a diagnosis of epilepsy.  Each year  45,000 children ages 15 and under develop epilepsy in the US.  Some of these...

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Seizures

Seizures

What are they and what to do Many people have an isolated seizure at some time in their lives. This can happen to anyone if the circumstances are appropriate. This is not the same thing as epilepsy which means having a tendency to recurrent spontaneous seizures. The information in this leaflet relates to people with epilepsy. What is a Seizure? A seizure (often called a fit and sometimes an attack, turn or blackout) happens when ordinary highly complex brain activity is suddenly disrupted. Seizures can take many forms, since the brain is...

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Epilepsy Vocabulary

Epilepsy Vocabulary

Frequently Used Terms in Intractable Childhood Epilepsy absence seizure (formerly called petit mal) generalized seizure most common in children; a lapse in consciousness with a blank stare that begins and ends within a few seconds. May be accompanied by rapid eye blinking or chewing movements. acute repetitive seizure more than one seizure in 24 hours for an adult; more than one seizure in 12 hours for a child atypical absence seizure generalized seizure seen mostly in epilepsy syndromes or epileptic encephalopathies; a...

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New ICE Terminology from ILAE

New ICE Terminology from ILAE

The ILAE has recently updated their classification of the epilepsy syndromes. The definitions they have listed on their website pertaining to "disease" and "syndrome" and "electro-clinical syndrome" are below: www.ilae-epilepsy.org

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Causes of Intractable Childhood Epilepsy

Causes of Intractable Childhood Epilepsy

Listed below are the epilepsy syndromes recognized by the International League against Epilepsy (ILAE) . The syndromes in red font are often associated with drug resistance or intractability and have additional information listed on the ICE website under childhood epilepsies. The link to the ILAE website for more information about the other syndromes is: www.ilae-epilepsy.org

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