Epilepsy Affiliates Split From National

Concerns about keeping local fundraising dollars in the region and the natural tension between providing direct service to constituents and focusing on research has led to another split of affiliates at a national health organization.

At least six affiliates of the Epilepsy Foundation of America (EFA) broke off from the national organization this week and formed Epilepsy Alliance America (EAA). The nascent national charity is in the process of partnering with state-based organizations. Initial state organizations are primarily former EFA affiliates:

  • Epilepsy Alliance Louisiana;
  • Epilepsy Alliance North Carolina;
  • Epilepsy Alliance Ohio;
  • Epilepsy Florida;
  • Epilepsy Pralid, Inc. in Rochester, N.Y.;
  • Epilepsy Services of New Jersey; and,
  • Sociedad Puertorriquena De Epilepsia in Puerto Rico.

Affiliates of the new EAA claim that the foundation’s focus has shifted in recent years more toward research, fundraising and centralizing operations at the national office while state affiliates remained engaged in more direct support of people with the disease. Similar concerns have been echoed among former affiliates of other national health organizations in recent years. Several affiliates of the Alzheimer’s Association separated in 2015 after the Chicago, Ill.-based charity restructured as a single, nationwide entity.

With the dissaffiliations that took effect on Monday, the Landover, Md.-based EFA has about 30 affiliates and another 20 chapters, which fall under the umbrella of the national office. In recent years, some affiliates have merged into EFA as chapters. The Epilepsy Foundation of Indiana merged into the Epilepsy Foundation in February 2015 and chapters in Utah and Oklahoma were created in April 2016, according to EFA’s financial statements.

Founded in 1968, EFA reported revenue of almost $16 million for the year ending June 30, 2017. President and CEO Phil Gattone estimated that the national office, combined with affiliates, will be in the $90 million range.

“Every effort was made because we truly value our relationship with the Epilepsy Foundation,” said Allison DeBattista, executive director of Epilepsy Alliance Louisiana. “It was a long process but at the end of the day we had to do what’s best for people we serve in our communities,” she said.

Karen Basha Egozi, CEO of Epilepsy Florida, formerly Epilepsy Foundation of Florida, said the new affiliates will work together to build a national collaboration among the agencies. The new organization will not immediately be staffed but will just be a way to come together and share best practices, like a trade association, De Battista said.

Gattone said the national office engaged in a process over the past couple of years in collaboration with affiliate executives, board leaders and other teams, to achieve a goal of a stronger, united culture. “We really set out for that aim because we want to make a bigger impact. We all agreed, we could make a bigger impact by leveraging resources, and we didn’t require a merger together,” he said.

The process began in October 2014, with the board discussing multiple models, including become a single 501(c)(3), like Alzheimer’s Association did. In fall 2015, a management operations team that included affiliate staff and national staff gathered data to inform those models. In spring 2016, the board released to the network a draft of a proposed framework for partnership models for discussion and input.

Affiliates were presented with four different models that evolved over time, according to Kathy Schrag, executive director of Epilepsy Alliance Ohio, formerly the Epilepsy Foundation of Greater Cincinnati and Columbus. She and Egozi were part of a committee that had been negotiating with the national office for the past several years on affiliate agreements that would be good for state-based organizations that provided services directly.

After several iterations of the existing agreement, affiliates were presented with an updated agreement to be signed by June 1. Those that did not sign were alerted later that the older agreement would expire in 30 days and if they chose not to sign, that meant they were disaffiliated.

“The culture we’re building is one of a much more activist consumer, where people can get involved in their own cause, and that’s at a community level. It’s less about our affiliate, chapter or home office and more about community of families driving forward for change. We really have to understand we’re a movement, that’s a big shift in our culture for us. We were a much more paternalistic organization in decades past,” Gattone said.

As with any exercise involving the natural tug between local and national organizations, Gattone said some wanted to choose a different path. “What we’ve built as part of a broader strategy, individuals and families are able to engage wherever they live,” he said, but a geographic presence is a priority. “Our society is changing in how we get our education and acquire resources, engage in support of care activities; everything is really growing on the digital platform side,” he said.

For Schrag and her board in Ohio, it came down to the affiliate agreement.

“We felt like the agreement was heavily focused on research. We thought it was important to stay true to our mission of programs and services,” she said. “Our board felt a huge misalignment between the two missions,” Schrag said.

“It’s a niche in the market for us, we can work alongside many organizations that do all kinds of other things and find what’s best for people who call our office the most,” DeBattista said. “I hate to say it’s competition, but it is two different organizations; we feel like we fill a need in Louisiana.”