Doose syndrome can carry a significant financial burden. Below are some of the resources we know of.
State and Local Resources
In some cases, children with Doose syndrome can qualify for significant disability resources. We are working to develop a network of people who know more about individual processes within states, but for now, consider asking your health care provider to recommend a medical social worker. Many epilepsy centers have them on staff and they are a good starting point for understanding the resources available in your community.
Organizations That Provide Grants For Safety Equipment
Founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny, 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.
Chelsea Hutchison Foundation
In her memory, The Chelsea Hutchison Foundation is designed to assist people living with Epilepsy. Funds raised by this Foundation provide grants for seizure-response dogs and epilepsy monitors for those in need, educate the public about SUDEP (Sudden Unexpected Death in Epilepsy), and provide support to those who have been affected by SUDEP. The Chelsea Hutchison Foundation exists to raise awareness of SUDEP and to grant comfort, hope, and positivity to individuals and families living with epilepsy. To date, The Chelsea Hutchison Foundation has had the privilege of providing 101 seizure-response dog grants and has provided over 420 life-saving night-time and daytime movement monitors for those in need. We have awarded 30 families with wish trips to the one-of-a-kind Epilepsy Awareness Expo and Day at Disneyland. The Expo offers a wealth of information and exposure to professionals, treatment options, education, and hope.