AAHD Executive Director, Karl Cooper, attended the biannual gathering of the National Advisory Board on Medical Rehabilitation Research (NABMRR) from May 4-5, 2026. This advisory group supports and oversees the critical research NIH is doing in the field of medical rehabilitation. As part of the gathering, NIH celebrated the Phase II recipients of the Community Champions for Disability Health Challenge, which highlights health promotion initiatives from across the U.S. and Puerto Rico. Through this program, recognized organizations receive cash awards, training, and mentorship, with support from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
With over 121 applications received from thirty-three states and Puerto Rico in Phase I, the winners represent a wave of innovative initiatives to address health disparities among people with disabilities. We want to uplift the incredible work of the three organizations that advanced to the second stage of this challenge:
Focus: Dental Education for People with Down Syndrome
The Challenge: Children and adults with Down syndrome are not receiving the dental care they need. When someone with Down Syndrome visits their provider, there can be complex accessibility needs and financial constraints to accessing needed care. Rural and underserved areas might not have services available for the people who need them. Communication and behavioral challenges can require specialized expertise. Too often, dentists are not trained in how to provide specialized support and accessible care to their patients with disabilities.
The Response: The Down Syndrome Association of Northeast Ohio organized 21 Smiles: Down Syndrome and Dental Education to address these needs. This project educated dental students on the oral health care needs of people with Down syndrome. The organization consulted with and included people with Down syndrome to provide their perspectives and lived experience in educational videos. The presentation to the NABMRR included an individual with Down syndrome where he explained how he assisted with the trainings being provided. The project also offered education to parents of children with Down syndrome to support access to oral health screenings and services . This included tips for parents to help provide daily hygiene support for those with Down syndrome and other intellectual disabilities.
Focus: Care for Hermansky-Pudlak Syndrome
The Challenge: Hermansky-Pudlak Syndrome (HPS) is a rare genetic condition. Across the lifespan, it can cause a number of health and accessibility challenges that impact a person’s life. HPS causes albinism, leading to lower levels of skin pigment and greater light sensitivity. People with HPS may lose their vision or have bleeding complications where their body doesn’t heal cuts or bruises quickly. This condition also leads to challenges with kidney and lung function. People with this condition have unique support and healthcare needs, and finding specialists can be a challenge. For providers, educational opportunities to develop this expertise are limited.
The Response: The Hermansky-Pudlak Syndrome (HPS) Network is building a model for accessible healthcare to support people with HPS across Puerto Rico. Over half of the global population living with HPS is in Puerto Rico, so it is a critical site for refining the needed systems of care. In Puerto Rico, care is offered through a free clinic, but the location isn’t always easy to access for HPS patients who are typically low vision or blind. Given this challenge, the HPS Network offers transportation support as an essential element of care delivery. Their care team is also working with a rehabilitation therapist on the island to establish a pilot pulmonary rehabilitation program to support people experiencing lung disease or navigating lung transplant. To support this community, they offered talking oximeters -an oxygen level reader- that could be accessible to low vision patients.
Focus: Fitness Accessibility
The Challenge: Staying physically active is an important part of mental and physical health for disabled people and community networks. Finding accessible fitness opportunities and adaptive sports can be a challenge. For elders and people with physical disabilities, having access to holistic health services for wellness is essential to community independence.
The Response: The Split Second Foundation in New Orleans, Louisiana developed a community space to meet the comprehensive health needs of disabled people in the region. The founder, Mark Raymond, had an accident that caused paralysis in his teenage years. He was confronted with a lack of accessible locations where he could engage in physical activity following rehabilitation. He created the Split Second Foundation to build an accessible fitness space for people with similar access needs. In addition to an accessible fitness program, they provide comprehensive care that considers the whole person’s health needs. They offer personalized care services that consider the physical, mental, social, emotional, and vocational needs of disabled people, so that they can live full lives. From exercise to case management and benefits navigation, this space aims to be a hub for promoting healthy living for disabled people. In the years ahead, they plan on scaling their model to serve more people, and plan on providing paid internships to high school students to promote careers in rehabilitation.
We congratulate all of the organizations and advocates innovating to improve health for disabled people in their communities. Reflecting on the meeting, our Executive Director Karl Cooper shared, “It was great to hear from these Champions and all the work they are doing. It underscores the importance of the support of NIH through the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the National Center for Medical Rehabilitation Research (NCMRR) in funding these important initiatives.” Learn more about the work of the Phase 1 winners, announced in January 2025.