Why People With Aphasia Serve on the NAA Board of Directors

The NAA has been committed to have people with aphasia among its leadership since its inception. People with aphasia have been on the National Aphasia Association’s board since the very beginning. All stakeholders are represented at the table: People with aphasia, care partners, speech-language pathologists, researchers, and neurologists.

We pull from a broad range of experiences — from people diagnosed after a stroke to care partners navigating a family member’s primary progressive aphasia. Being inclusive of everyone in the aphasia community is part of the mission. That work begins on the board and extends across the United States to individuals impacted by aphasia.

NAA President Darlene Williamson notes, “Critical pieces of the mission of the NAA, education, advocacy, and support are completely tied to the aphasia experience and must be guided by people with aphasia and caregivers.”

Doreen Mendez, stroke survivor, former board member, and now special advisor to the Board of Directors, agrees.

Overall, having people with aphasia on the board of aphasia organizations is essential for promoting a more inclusive and effective approach to advocacy, support, and awareness. By including the voices and perspectives of those living with the condition, these organizations can ensure that their efforts are truly representative of the needs and concerns of the community they serve. Collaborative decision-making and a commitment to diversity and inclusion are key to fostering positive change and building a more supportive and understanding society for people with aphasia.

If the work is meant to help people with aphasia, the work needs to be guided by people uniquely positioned to say what people with aphasia need. Mendez points out: “By having individuals with aphasia directly involved in decision-making and policy development, these organizations can better address the needs and concerns of those affected by the condition.”

Williamson urges all aphasia organizations to include people with aphasia.

It is incumbent upon any nonprofit organization to include stakeholders among its leadership. It simply makes sense that those who the organization serves should direct the priorities. In the case of the NAA, it is essential to respect people with aphasia and tap into their backgrounds and expertise to carry out the organization’s work.

We are so grateful to the numerous board members who bring their personal experience with aphasia to the table, along with their leadership expertise.