Feature Article: The Epilepsy Alliance America: a cornucopia of resources, initiatives and projects supporting those living with epilepsy and seizures.
Epilepsy Alliance America (EAA)-an organization dedicated to supporting those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures.
Our readers may or may not have heard about EAA before today. If you are one of those who are just hearing about this alliance, you will want to keep reading.
In the past couple of years, EAA has grown exponentially and is now providing an exceptional array of services (education and reading materials, camp programs, employment and medication assistance, legislative advocacy, seizure first aid training, support groups and networking opportunities, scholarships, and much, much more). This group has also been busy creating alliances among other superb groups leading to strength in numbers. Our questions were answered by several staff members in EAA.
When was EAA founded and who were the founding members and what was the purpose of forming this alliance?
Epilepsy Alliance America was founded in July 2018 when eight established epilepsy organizations came together. They were looking for a collaborative space, a consortium, for like-minded epilepsy organizations that were providing direct services to people with epilepsy and their families. The eight founding members of Epilepsy Alliance America are: Epilepsy Alliance Florida, Epilepsy Alliance Louisiana, Epilepsy Alliance North Carolina, Epilepsy Alliance Ohio, Epilepsy Alliance West Central New York, Epilepsy Association of Western and Central PA, Epilepsy Services of New Jersey and the Puerto Rican Epilepsy Society.
Member organizations of Epilepsy Alliance America have been collectively supporting people with epilepsy for decades through support services, information, education, advocacy, and public awareness. As a result, the Alliance provides real epilepsy help to approximately one million Americans living with epilepsy.
Services provided by Member Organizations vary, but include educational programs in schools, seizure recognition and first aid training for school personnel, individual/family consultations, legislative and special education advocacy, medication assistance, camp programs, respite care services telephone support, and more.
Please visit Current Members on the Epilepsy Alliance America website to learn more about the real epilepsy help available in your local community.
A quick scan of EAA Services tab reveals many including some that we were unaware were associated with EAA, specifically the Seizure Action Plan Coalition, HOBSCOTCH, and the Managing Epilepsy Well Network. Please tell us about those programs and how someone can access them through EAA.
Many studies have documented the fact that seizure self-management programs can help to reduce stress, improve health outcomes and even help to reduce seizure frequency in many epilepsy patients. The Managing Epilepsy Well Network is a group of universities that studies and develops the best of these evidence-based, self-management programs for people with epilepsy. Several of EAA’s member organizations have staff trained to conduct HOBSCOTCH, SMART and other programs from the Managing Epilepsy Well Network. Patients and their families can access information and programs through the Epilepsy Alliance America website and its member organizations.
Is there an alliance between the Seizure Action Plan Coalition, the LGS Foundation, Dravet Syndrome Foundation, and TSC Alliance? And how is that helpful to people living with epilepsy?
The Seizure Action Plan Coalition was started in 2020 when 3 groups came together to create the coalition: The LGS Foundation, the Dravet Syndrome Foundation and the TSC Alliance. This was truly a labor of love for these three organizations who, through the Coalition, conducted two successful campaigns about the importance of everyone, children and adults with seizures, having a Seizure Action Plan. The founding members of the coalition felt strongly that the Seizure Action Plan Coalition messaging should be distributed beyond the rare epilepsies community and that the Alliance was the best organization to manage the next phase of the campaign. EAA was delighted when the Coalition asked us in 2022 to become the managing organization of the coalition. Since its inception, the Seizure Action Plan Coalition has grown to more than 50 awareness partners. Epilepsy organizations across the country come together annually to recognize Seizure Action Plan Awareness Week, which takes place the third week of February each year. This year, there were additional promotions to discuss the importance of seizure action plans for campers during the summer months and for school-aged children getting ready for back-to-school. This is helpful information to everyone living with epilepsy because everyone with epilepsy should have a seizure action plan.
We saw a map on your website that lists all your member organizations and a section that states: “Coming soon.” Why would a new member organization want to join your alliance and what sort of organizations can join?
Epilepsy Alliance America started as an alliance of eight established epilepsy organizations and currently we have 17 member organizations. Member Organizations join because they want to be part of a network of like-minded organizations. Our member organizations are of all different shapes and sizes. The largest member organization has a $30 million budget - our smallest has a $50,000 budget. Some of the staff teams are over 35 people – others, have a staff team of one. We provide a space where staff, board members, and volunteers can collaborate and share resources that they might not have access to in their geography or within the confines of their specific organization. Sharing resources, mutual mentoring, all helps to build the local capacity of organizations to reach more families in needs of our help.
Tell us about the scholarships you offer? And about your camp programs?
Epilepsy Alliance America does not have a formal high school scholarship program at this time for individuals with epilepsy. However, many of our member organizations do provide scholarships. If people make an inquiry to EAA about those scholarships, we refer them appropriately. Our website also has a list of other scholarships available by additional epilepsy groups in the country. Scholarships - Epilepsy Alliance America
We are proud to be the managing organization of the Lorna Myers Scholarship for Students with Psychogenic Non-Epileptic Seizures (PNES). This scholarship program has been housed at Epilepsy Alliance America since 2021. We award between one and ten scholarships annually, depending on our applicant pool, and funds available. Typically, applications are due in April and are awarded in June each year. The scholarship program is limited to individuals with a PNES diagnosis; however, it is not limited to just first-year college students. We accept applications from individuals at any step in their post-secondary education career, including those who may be attending graduate school or trade schools.
Lorna Myers PNES Scholarship Fund - Epilepsy Alliance America
EAA Member Organizations often provide scholarships for summer camp programs as well. Epilepsy Alliance America promotes the camp programs that many of our member organizations have available for children and young adults with epilepsy. On our website, we provide direct links to these camp programs.
Tell us about your Digital Resource Library which looks like a treasure trove of useful materials.
Our digital resource library has a wide array of downloadable tools including seizure action plans, seizure first aid guides, resources in Spanish, and much more. All of these materials are available on our website for anyone who is affected by epilepsy or provides services to people with epilepsy.
Tell us about your Seizure ID program and your “Be Seizure Savvy” instruction.
Our seizure ID program has been live on our website since November 2020. This program is funded through a partnership with Jazz Pharmaceuticals. Epilepsy Alliance America provides a $35 coupon code to anyone with epilepsy who would like to purchase a seizure ID device at www.getmyid.com. There are a variety of products available from wearables to ID cards to bands that can be added to an Apple Watch. There is a QR code and an app where you can upload your information about your medical condition, whatever information you would like to provide. It could be as detailed as having a formal seizure action plan in there or as limited as having your emergency contact and your medical condition indicated. This information is then provided to anyone who scans the QR code – helping both emergency responders and others respond appropriately to the person’s seizure. This is a great resource for individuals of all age to have a wearable so that individuals will know what to do if the person is found having a seizure.
Is there anything that we have not asked and that you would like our readers to know?
Epilepsy Alliance America is a national partner of Epilepsy Expo and Awareness Day at Disneyland Resort – the largest patient-focused epilepsy event in the world! This year, the event will be held on October 30-November 1, 2023. One of our newest EAA members, Sofie’s Journey, founded and manages this truly amazing event. The two-day expo is completely free to attend and is packed with valuable education and information for families dealing with the challenges of epilepsy and seizures. The Awareness Day at the Park does require a park ticket. We encourage any of your readers who would like to learn more about this event join our mailing list as we will be sending out more information in advance of this amazing event.
Thank you for providing us and our readers with this tremendously useful information and congratulations for having put together such a excellent alliance for people living with epilepsy and seizures. Truly impressive!
