By Amber Kaiser
A few weeks ago, when I started researching to write and provide you with a convenient One Stop for Epilepsy Support Services, I learned about Epilepsy Alliance America (EAA) and how they started just a few years ago in 2018. EAA’s mission is dedicated to supporting those impacted by epilepsy in local communities confronting the spectrum of challenges created by seizures. They help local, regional and statewide epilepsy organizations come together and make each other even stronger with their services and opportunities to help people in the epilepsy community.
I connected with Lisa Gallipoli, who is the Chief Operating Officer for EAA, to learn more about their organization, how they started, all the amazing services they provide and where they are headed.
Knowing there is power in working together and forming collaborative relationships and strength in numbers, the leaders from these organizations came together and founded Epilepsy Alliance America. Epilepsy Alliance America provides the space for these organizations to collaborate and share tools and resources while maintaining their autonomy. The eight founding organizations saw a gap in the epilepsy market place and felt Epilepsy Alliance America could fill that gap.
As of August 2022, we have 15 Member organizations. More than 1.5 million people with epilepsy live in the service area of our member organizations.
On the national level, we may be young; however, our impact is growing. In 2022, we’ve added 4 new member organizations and have applications pending for a few more. We think we’ll end the year strong with membership (learn about membership here). New member organizations are attracted to our national initiatives like the recent launch of our On-Demand Seizure Recognition and First Aid Training for School Personnel. It has been very successful! Already, we’ve educated over 1,800 school personnel and community members.
The biggest needs in the epilepsy community are acceptance, connection to others, access to medical care, and a cure. The member organizations of Epilepsy Alliance America are focused on providing services and support that address the first three; and we are incredibly grateful to organizations such as CURE for working tirelessly to support research for a cure.
Our member organizations foster acceptance, connection, access through a wide variety of programming to help people cope with epilepsy. Epilepsy education and seizure first aid training for schools, social and recreation programs like summer camps, providing medication and seizure monitoring devices and support groups. These types of programs make life a bit easier for you if you’re living with epilepsy.
The best days are when you see a child, a family, an individual reach a goal. Some of those goals are large and life changing, some may seem small, but are just as important. If we and our member organizations can put something into place that helps someone achieve that goal, that’s what we love. So, if training the teachers or bus drivers allows a child to attend school, we love it. If providing a service dog is what it takes to get a young man back to work, we love it. If getting someone their medication for a month or two while they’re unemployed keeps them safe, okay.
The truth is we’d all love to see a cure tomorrow. No one wants to see anyone have to live with seizures, not for another day. But, since we know that’s not likely to happen, we’ll be here to band together to help one another. Epilepsy Alliance America and its member organizations are here to help people with epilepsy reach beyond today and into tomorrow, to reach those goals and achieve their dreams.
An epilepsy diagnosis can really turn one’s world upside. For parents whose child was diagnosed, it brings an immense number of new things to manage and worry about. For an adult, it can mean a loss of freedom and independence. Acceptance is hard and takes time.
Our advice is to, one, be kind to yourself. Take time to work through your feelings with a trusted family member, friend, or therapist. And two, reach out to others – to your local epilepsy organization, to an epilepsy online community. Epilepsy is not a journey you have to go through alone.
Our three most helpful resources for people affected by epilepsy are:
1. Our member organizations are immensely helpful to folks who are living in those areas and we’re thrilled to refer people to member organizations for local help and support.
2. On-Demand Seizure Recognition and First Aid Training for School Personnel This training provides critical information about epilepsy and seizures for all caregivers and helps kids with epilepsy to be accepted and safe. We are super excited that in 2023, we will be adding a Spanish-language version of this training and adding a brand-new mental health & epilepsy module as well!
3. Our Seizure ID program, generously funded by Jazz Pharmaceuticals, provides no and low-cost seizure ID products to the epilepsy community. This program promotes safety and independence for patients with epilepsy by allowing doctors and first responders treating a patient to have access to their emergency contact information through a QR code as well as patient-provided information about their epilepsy.
4. The S.T.E.P.S. Tool, developed and promoted in partnership with SK Life Science, is a one-page, easy-to-use document that helps both epilepsy patients and their caregivers have better conversations with their doctor. We encourage patients to fill it out before their next neurologist appointment and bring it with them. This tool fosters better communication between patient and doctor and helps the entire care team work to create the best treatment plan for the person with epilepsy.
Epilepsy Alliance America is open to partnering with all organizations working to support people with epilepsy. At the national level, we currently work with the Epilepsy Foundation through two main avenues: as members of the Epilepsy Leadership Council, we work together to support important federal advocacy issues, and as members of the CDC-sponsored Managing Epilepsy Well Network in promoting evidence-based programs and practices for people with epilepsy.
On a local level, our member organizations have the discretion and autonomy to partner with whomever they see as the best fit to efficiently and effectively serve their communities and the best interests of people living with epilepsy. For example, our New York member, Epilepsy Alliance of West Central NY, works closely with three Epilepsy Foundation of America affiliates on state-level advocacy issues and on a state-wide epilepsy educational conference for people with epilepsy.
Epilepsy Alliance America is a growing national organization representing like-minded local, regional, statewide, and even other national agencies serving the everyday needs of people who live with seizures and epilepsy every day.
Our member organizations connect with each other regularly through board meetings, committee meetings, internal newsletters and a member portal. We connect as other national organizations do via a variety of channels. One of the many pandemic lessons learned is that we can build strong relationships in a virtual space.
Epilepsy Alliance America is a grassroots network of already existing epilepsy organizations. We would love to expand our reach into more states through the addition of well-established epilepsy organizations providing local services to our membership ranks.
If it takes a village to raise a child, it takes a team to manage an epilepsy diagnosis. Our member organizations can be part of that team. They work to get to know the people and families they serve and provide solutions to the challenges they face. If you’re listening and you are a like-minded organization serving the needs of people who have epilepsy, we’d love to talk to you about joining our Epilepsy Alliance America team.
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Epilepsy Alliance America: 347-987-1610
Epilepsy Information Service Line: 1-800-642-0500