Dravet Syndrome Won Compassionate Allowance Recognition

Dravet Syndrome Won Compassionate Allowance Recognition

Commissioner Astrue held an event at the Hart Senate Building at 10:00 a.m in Washington, DC to commemorate the milestone of reaching 200 Compassionate Allowances conditions. The newest of these conditions is a rare disease called Dravet Syndrome. ICE Alliance was a key participant in the presentations at the public hearings to win this recognition for Dravet Syndrome.

read more

American Epilepsy Annual Meeting 2010

American Epilepsy Annual Meeting 2010

The American Epilepsy Society's Annual Meeting is the premiere meeting for epilepsy and other seizure disorders. The Annual Meeting is an international forum for the exchange of current findings in epilepsy research. Information is communicated and disseminated through symposia, lectures, scientific exhibitions, poster and platform presentations.

read more

Hope In Action

Hope In Action

Novel Compound Designed to Increase Protein Expression in SCN1A loss of function Mutations •More than 700 mutations of the Scn1a gene have been identified making this the most commonly mutated gene in human epilepsy. •More than 50% of these mutations result in a truncated protein clearly demonstrating haploinsufficiency of SCN1A as a cause of Dravet Syndrome. This means the mutation leads to a loss of function due to a premature stop codon (frameshift, nonsense, splice site, deletion, microdeletion)

read more

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

read more

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...

read more

Dravet Testing Facilities

Dravet Testing Facilities

A listing of centers across the world that offer SCN1A testing for Dravet Syndrome.

read more

Request for Nursing Services

Request for Nursing Services

To all ICE advocates:  This letter was written by a parent of a child with Dravet syndrome who appealed to the Ohio state Medicaid department for nursing services to care for her child.  Each state has a different policy and plan for developmentally disabled children and their care, dependent on level of need.  Please look for additional articles and letters on pursuing care for children with ICE, and where to look. State: OH Waiver name: Level One Description: This waiver allows MR/DD persons of all ages who meet the ICF/MR level of...

read more

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.

read more

ICE Alliance Exhibits in Child Neurology Society Annual Meeting

ICE Alliance Exhibits in Child Neurology Society Annual Meeting

The Intractable Childhood Epilepsy (ICE) Epilepsy Alliance will represent children with drug resistant epilepsy at the 2010 Child Neurology Society’s (CNS) 39th Annual Meeting in Providence, R.I., on Oct. 14 and15. ICE Epilepsy Alliance founder Michelle Welborn, PharmD, and Tammy Robinson, a parent volunteer from Ohio, will represent the ICE Epilepsy Alliance at the conference.

read more

CDC-NIH Forum on SUDEP

CDC-NIH Forum on SUDEP

Michelle Welborn, PharmD, founder of the Intractable Childhood Epilepsy (ICE) Epilepsy Alliance, is one of 30 epilepsy advocates and researchers who will take part in an open forum discussion in Washington, D.C., on Oct. 13, about the causes of Sudden Unexpected Death in Epilepsy (SUDEP).

read more

Alternative Therapy

Alternative Therapy

Alternative therapies in treating epilepsy Yatin Patel Doctor of Pharmacy Candidate Wingate University School of Pharmacy Michelle Welborn, PharmD Preceptor Intractable Childhood Epilepsy Alliance www.ice-epilepsy.org Abstract Many people in the  United States experiment with  complementary and alternative medicines (CAM) on regular basis. The objective of this article is to provide a synopsis of available literature regarding use of alternative therapies in the treatment of epilepsy. Evidence based data on efficacy of CAM therapies in...

read more

Free Appropriate Public Education for Students wtih Disabilities

Free Appropriate Public Education for Students With Disabilities:Requirements Under Section 504 of The Rehabilitation Act of 1973 Introduction Section 504 of the Rehabilitation Act of 1973 protects the rights of individuals with disabilities in programs and activities that receive federal funds. Section 504 provides that: “No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to...

read more

FAPE Pre-school Letter Template

FAPE Pre-school Letter Template

At times, as a parent advocate for a child with intractable epilepsy, we must become warriors.  Your school age child is entitled to a Free and Appropriate Education (FAPE) beginning at age 3 years old in most states. Below is an example of a letter written to advocate for a child to be placed in a private pre-school. Administrator Public School Pre-School Intake Special Education Program Hometown, USA November 1, 2009 Dear _______________: I hope you had a good couple of days off for fall break.  I’m writing to request an IEP meeting...

read more

Orphan Drug Request Template Letter

Orphan Drug Request Template Letter

Dear Parent: This is the template I have given to many parents who have advocated for payment of stiripentol, clobazam or Epistatus by private insurance or Medicaid. My first job out of residency was as Clinical Formulary Manager for a Health Maintenance Organization (HMO).  In this role, I decided if exceptions should be made for drugs not covered by the insurance plan. This template should reflect your child’s disease course and may serve as a guide for your letter or appeal for prescription coverage.  The letter wordy, but  I...

read more

Canadian Dravet Syndrome Template Letter

Canadian Dravet Syndrome Template Letter

This article is on behalf of Canadian families who are seeking payment of Dravet syndrome therapies. This letter was distributed to the National Health Plan on the patient's behalf.

read more

Adaptive Stroller Request Template Letter

Adaptive Stroller Request Template Letter

This template letter for an adaptive stroller and adaptive car seat for your child may be useful if you are pursuing payment of these items by your insurance carrier.

read more