Susan Brekelmans, CFRE
Senior Consultant
Health equity. It continues to be a priority for hospitals and healthcare organizations even as the phrase has become a political flashpoint. Learn how two different organizations have developed and fundraised for initiatives focused on removing obstacles to health while incorporating best practices in program development, storytelling, and donor acquisition.
Across the US, health-focused organizations of all kinds pursue health equity as part of their mission. They envision a world in which “all people are given the chance to live as healthy a life as possible regardless of their race, ethnicity, sex, sexual orientation, disability, education, job, religion, language, where they live, or other factors.”
Two of Benefactor Group’s long-time client partners advocate for often-overlooked patient populations, striving to deliver better health outcomes and remove barriers. They have risen to the challenge to shape initiatives that matter to their communities. They have also found ways to incorporate equity into their fundraising practices: telling stories in a way that respects the people they serve and finding many ways to include and thank the people who support them.
I Am Boundless
Founded more than 40 years ago, I Am Boundless (Boundless for short) provides people with intellectual and developmental disabilities (I/DD) and behavioral health challenges the freedom and opportunity to live boundless lives.
Staying healthy can be a challenge for people with I/DD. Some have higher healthcare needs, and accessing healthcare is a documented challenge for people with disabilities. According to the Missing Billion initiative, “people with disabilities experience worse health outcomes and a staggering 10-20 year life expectancy gap compared to persons without disabilities.” Yet few public health policies address this discrepancy in access to care.
Boundless has a long track record of offering people with I/DD and behavioral health challenges the tailored support they need to thrive. In 2019, the organization began considering how it could fill this major gap in services by providing compassionate, skilled primary and preventative care for people with I/DD to stay healthy in mind and body.
Epilepsy Foundation of America
The Epilepsy Foundation of America (EFA) also serves a community that often has difficulty accessing care. Shockingly, low awareness among some medical providers means that significant numbers of people with epilepsy are not referred to a neurologist for care that could improve their quality of life. In addition, while epilepsy affects people across all demographic groups, the burden of epilepsy is not equally shared. Disparities in access lead to major differences in outcomes—shaped by socioeconomic status, geography, race and ethnicity, and access to adequate health insurance.
With the goal of creating a future where no one faces epilepsy alone, the Epilepsy Foundation of America seeks to bring supporters together to address these disparities in care. By strengthening research and expanding access to vital resources, EFA works to build a healthier, more informed community.
Developing Health Equity Initiatives
A slogan used for decades by disability activists, “Nothing about us without us” emphasizes that programs and policies affecting a community should integrate representatives in the decision-making process. Philanthropy must honor this central rights and justice principle by centering the people who use or benefit from an organization’s services when defining health equity initiatives and translating them into a case for philanthropic support.
At Boundless, the concept of a one-stop shop for healthcare arose from the experiences of people living with I/DD and their families. People served by Boundless’ other programs shared that it was impossible to locate a dentist, family physician, psychiatrist, ophthalmologist, cardiologist, or endocrinologist who understood the specific challenges that a person with a developmental disability may face. Patients experienced discrimination when providers refused to serve them, had lower expectations for quality of life, or rushed them through appointments.
After listening to the experiences of families and individuals living with I/DD, Boundless proposed a revolutionary, person-centered healthcare vision: an integrated, multi-disciplinary health center designed specifically for people with disabilities and/or neurodivergent conditions.
Epilepsy Foundation of America has also sourced information from its community to define its initiatives. When Beatrice (Bee) Martin Lee became CEO of EFA in 2023, she embarked on a listening tour to ensure that the organization’s vision and priorities mirrored the needs and goals of people with epilepsy—including addressing barriers to care.
Make sure you are talking with the community you are serving. Sometimes we think we know what the needs of the community are, but we don’t ask the people who are actually living with the issue.”
Bee believes that with this renewed mission, vision, and strategic plan, EFA has greater clarity and has inspired more supporters to join its cause. In early 2026, EFA was granted funding for a research project that prioritizes community voices: Community-Engaged Health Equity Research in Neuroscience Initiative (HERN). This planning grant will help develop a heath disparity research agenda for epilepsy, focused on understanding the local drivers of epilepsy disparities for Black and African American people with epilepsy in the greater Philadelphia area.
Including Community Voices in Fundraising Communications
Storytelling brings our fundraising priorities to life: without stories about real people and how they benefit from an organization’s mission, it’s impossible to inspire donor support. An equity-centered mindset ensures these stories are told in a way that honors and includes the people an organization serves.
Epilepsy Foundation of America’s eJourney Community Blog collects powerful personal stories that show the urgency and impact of EFA’s work, while giving people agency over how their stories are told. Ownership of one’s own experience is a key part of ethical storytelling in fundraising. (For a deeper dive on ethical storytelling, check out this toolkit produced by SNAP Nutrition Education Administrators).
At Boundless, voices from the community include family members and staff alongside clients and patients. Boundless honors the complexity of its communities by sharing long-form stories—rejecting the impulse to simplify a person’s experience—and by prioritizing authenticity, dignity, and consent. “We rely on Boundless’ core values—love, respect, empowerment, well-being, and excellence—to guide every aspect of our work, including storytelling and donor engagement,” says Jodi Bopp, the Vice President of Advancement and Communications at Boundless.
Both EFA and Boundless emphasize strength-based communication principles. Some go-to tactics include:
Highlight Strength: Lead with strength, opportunity, and power of neighbors.
Lead with Neighbor Agency: Eliminate saviorism and make neighbors the heroes and central actors in their stories.
Uplift Context: Pair discussion of challenges with context for the root causes that create them.
Center Humanity: Incorporate stories and quotes that uplift and center neighbor’s voices. Additionally, use people-first language that describes the person, not their condition.
Avoid Stigma: Eliminate all othering statements, coded language, and framing of needs as individual weaknesses. Additionally, minimize framing that perpetuates stereotypes about neighbors.
Welcoming Supporters of All Kinds into the Donor Pipeline
The data about giving—indicating that affluent households are more likely to be philanthropic—has led many fundraisers to focus on major gifts and high-net-worth prospects. This approach risks ignoring the generosity of other donors—people who make smaller gifts, less frequent gifts, or who give their time and passion to causes that matter to them.
An equity-centered mindset reminds us to ensure that all donors feel seen and thanked—valuing all kinds of support.
For Boundless, welcoming all donors happened as a matter of course, since the advancement team started from scratch when fundraising for the new health center. “We launched a philanthropy program with no database, no donors, and no culture of giving,” Jodi recalls. Many donors were families of people served by Boundless, and every single gift helped to open the health center. “We managed to launch a capital campaign in the middle of a global pandemic and successfully finish the campaign a little more than two years later.”
Boundless recognizes that philanthropy is more than just giving—advocacy and volunteer work are also expressions of philanthropy.
It’s a declaration that we live in an interconnected world, where compassion and action go hand in hand.”
Like Boundless, the Epilepsy Foundation welcomes and values a broad range of supporters. Advocates across the country push for federal and state initiatives that impact everyone living with the epilepsy. Volunteers educate others about epilepsy and organize fundraising events that reach new supporters. (In 2025 the estimated worth of a volunteer hour was $36.14, reminding us that time is one of the most valuable gifts a supporter can offer!) Walk participants raise funds and raise awareness and overcome stigma.
These activities build real connection to EFA—and volunteers and advocates are more likely to make donations: studies show that people who volunteered one year were more likely to give the following year.
Conclusion
Benefactor Group has been honored to work with I Am Boundless and Epilepsy Foundation of America—two organizations striving to deliver “as healthy a life as possible” to people who have historically had difficulty accessing the care they need.
If health equity is core to your mission and you are working to welcome and celebrate your communities and donors in an inclusive way, we’d love to help you with authentic storytelling and big-tent donor acquisition.