The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and funding of research that will lead to a cure for intractable childhood epilepsies.
Until we conquer intractable childhood epilepsy, we will work tirelessly to enhance the life of those with intractable childhood epilepsy by functioning as:
- Scientific pioneers, blazing new trails in intractable childhood epilepsy, facilitating understanding of ion channel epilepsies and encouraging discover of new causes of epilepsy related to the ion channel. We promote development of better treatment and ultimately a cure for the ion channel epilepsies, beginning with Dravet syndrome. We sponsor continuing education initiatives on the intractable childhood epilepsies, and provide evidence based information and support to improve the outcome of children affected by intractable epilepsies;
- Fund-raisers, securing the money needed to support education and research initiatives, medical information, data dissemination and research goals;
- Advocates, keeping intractable childhood epilepsy top priority in government, industry and research and providing physicians with resources and tools to facilitate the best care and advocacy for their patients;
- Investors, funding drug discovery and development;
- Caregivers, linking patients and families to resources that improve quality of life;
- Family, offering support to parents and caregivers through information and resources, empowering them to help their child, to ensure the best outcome possible, to have hope, to “ICE the INFERNO”.
ICE is a voluntary non-profit with no paid employees. The contents of this website have been written by Harriet Davies, PharmD or Doctor of Pharmacy students under her direction through an ICE Drug Information rotation with accredited pharmacy schools in North Carolina. Additionally, other interns or professional volunteers contribute to the website from time to time.
All donations made to ICE Alliance go to support education or research initiatives.