Connection is Critical
Losing a loved one to an epilepsy-related cause can be heartbreaking. Bereaved families are not alone. Below is a list of family led foundations who have established a charity in response to the loss of a loved one. We also included public organizations that provide SUDEP education as resources for all members of the epilepsy community. PAME hopes you can use this resource as a starting place to find connection with other families that turned their grief into action.
Anita Kauffman Foundation / AKA Purple Day Everyday
The mission of the Anita Kauffman Foundation is to make a kinder world for people with epilepsy and brain trauma through seizure first aid training, education, and advocacy.
The BAND Foundation is a US-based private family foundation that makes grants in support of nature conservation and epilepsy care. The BAND Foundation actively supports cutting-edge epilepsy research and places a strong emphasis on SUDEP prevention and education in the United States. In addition, BAND Foundation recognizes the dire need for epilepsy care in low-resource settings, especially in Africa where the disease is more prevalent than in the US and the majority of people lack even the most basic of treatment.
The Chelsea Hutchison Foundation serves individuals, families and communities affected by epilepsy by raising Awareness of the common yet little-known condition SUDEP (Sudden Unexpected Death in Epilepsy), by providing support and equipment for prevention of this occurrence, and by creating a safe space and raising awareness within the greater community.
The Foundation advances public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families affected by seizures, and advocates for the mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths.
The mission of the Emma Bursick Memorial Fund promote public awareness about epilepsy and SUDEP, and to promote and support research into the cause and prevention of SUDEP. EBMF supports SUDEP research, emergency medication assistance programs, community outreach and education, seizure detection monitor grants, and coordination with other SUDEP organizations.
Hope4Harper is not for profit organization created in honor of Harper exclusively for serving charitable, educational, awareness and scientific purposes related to providing hope to those living with CDKL5 disorder and other diseases that may be viewed as similar, in an effort to help control and eliminate the various symptoms associated with the disease.
Hope For Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas drives education, support, and research in this complex syndrome. We focus our efforts and funding on early detection, improved treatments, and managing HH as a complex medical syndrome with the goal of one day finding a cure.
The Isaiah Stone Foundation honors Isaiah’s memory by raising awareness about pediatric epilepsy, supporting parents of children who suffer from epilepsy, and raising money to fund medical research and practice. Our hope is that we can help someone else with epilepsy and be a part of finding a cure.
The mission of The Jack Pribaz Foundation is to raise awareness and fund research of the KCNQ2 gene. Abnormal changes, or mutations, in this gene are associated with seizures and epilepsy.
Jackson Casey SUDEP Awareness Foundation
The Casey family has a passion for educating other families about the risk of SUDEP, in the hopes of preventing others from experiencing the tragedy of losing a child.
Jenna Robinson Charities provides scholarships to those in the performing arts, and this continues today. Through her struggles and after her passing, Jenna’s family became aware that there was a need in the area to support families living with epilepsy and the charity was started. We expanded our focus to include awareness and support of those families living with Epilepsy and SUDEP (Sudden Unexplained Death in Epilepsy).
It is our mission to help young adults achieve their goals and live a meaningful, productive, and independent life as Jon did and would have all the days of his life. The Jon’s Bear Hug Foundation supports scholarships for high school students on their way to technical career training and an epilepsy safety net program.
The mission of Josh Provides is to improve the lives of those living with epilepsy or other seizure disorders. The organization provides support groups, medical services assistance, seizure alert and detection devices, seizure response dog grants, and transportation assistance grants.
Kayla Ross Perry Memorial Fund
The Kayla Ross Perry Memorial Fund provides college scholarships, raises awareness about Epilepsy & SUDEP; promotes/supports creative arts events that provide healing; and provides resources for those living with Epilepsy.
The Foundation was established in 2023 in honor of Landon D’Aprile. The goal of the Foundation is to assist children with special needs and their families.
Laney MacLeod Foundation for Epilepsy Research
The Laney MacLeod Foundation for Epilepsy Research is established in honor of Delaney Emily MacLeod “Laney,” our amazing daughter who lost her life to Sudden Unexpected Death in Epilepsy (SUDEP) within 3 years of being diagnosed with epilepsy. The foundation’s mission is to support medical professionals and philanthropic organizations dedicated to the treatment of epilepsy and the mitigation of SUDEP risk factors, the leading cause of death in epilepsy.
Oskar Killinger Foundation in Germany
Together against sudden epilepsy death (SUDEP) – Education, prevention and first aid save lives!
The Addison Hutchison Foundation
We are committed to honoring the memory of Addison by helping support our area’s youth in three vital areas: Educational Support -Provide financial support for children’s educational activities; Athletic Support -Provide scholarships & grants for athletic fees & equipment; and Spiritual Support -Foster a closer relationship with God.
The Cameron Boyce Foundation (est. 2019) honors the legacy of Cameron Boyce by aiming to cure epilepsy through funding research, education and awareness campaigns while still supporting causes that were important to Cameron.
The mission of the NORSE Institute is to increase the awareness of NORSE; to stimulate, integrate and support NORSE research; and to develop a shared community of NORSE researchers and families.
The mission of When the Trumpet Sounds is to provide services and assist with accessing care and treatment for people with chronic, rare and debilitating diseases through collaboration, advocacy, and education/awareness. Tanisha and Bobby Graves established in honor of Marquis Devon Chapman, who died of SUDEP in 2019.
The Whitten-Newman Foundation is an umbrella nonprofit that also encompasses FATE (Fighting Addiction Through Education), Sewing Hope, ExplOrology, and Dylan Dreamed. All of these are run by the WNFF board and are founded to educate, empower, and embolden those who are facing addiction, poverty, lack of resources, and stigma around the world.
Organizations Providing Education on SUDEP:
Epilepsy Foundation of America
The Epilepsy Foundation’s SUDEP program works to prevent SUDEP and support people bereaved by SUDEP and other epilepsy-related deaths.
CURE Epilepsy’s mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy, with the assistance of many parents who were seeking answers, launched the first-ever private research program dedicated to advance the understanding SUDEP and its prevention in the US. Since pioneering the first SUDEP research nearly 20 years ago, CURE Epilepsy has funded 38 grants for a total of $5.3M.
If you would like your organization to be added to this list, email PAME@aesnet.org.