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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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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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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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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Comorbidities of Intractable Childhood Epilepsy

Comorbidities of Intractable Childhood Epilepsy

In addition to seizures, children with intractable epilepsy often have a lowered IQ, and real problems with learning and memory. They may also have significant psychosocial problems, some of them related to the anticonvulsant drugs. People who work with these children must learn patience, and try to evolve new strategies for the promotion of learning. These people need sympathy and support. Intractable epilepsy is a true – if invisible – disability.

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Myoclonic Status in Nonprogressive Epilepsy (MSNE)

Description: Severe myoclonic epilepsy, which occurs either in the whole body or one side of the body (muscles). It is also possible that the patient might have recurring seizures that may lead to neurological deterioration. Other Names & Associated Genetic Mutations There are no other recognized names for this syndrome, and no genetic mutations identified with it at this time. Useful Links & Associated Physicians 1) URL: http://www.ncbi.nlm.nih.gov/pubmed/19469845 Associated Physicians: – Dr. Maurizio Elia : Unit of Neurology...

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Orthotics for Intractable Epilepsy

Orthotics for Intractable Epilepsy

Although orthotics are mentioned in many books available to families and professionals, there are few magazine articles or newspaper stories that mention these commonly used shoe inserts that do make a difference to children with epilepsy that also have low muscle tone or an abnormal gait or teens who have pain or discomfort due to walking differently during early childhood and beyond.

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