“Hope is universal—it unites us, uplifts us, and strengthens us, no matter the challenges we face.” – Judith Chavira, Outreach Project Manager at Barrow Neurological Institute
Judith Chavira, the Outreach Project Manager at Barrow Neurological Institute in Phoenix, Arizona, is at the forefront of efforts to bridge the gap between underrepresented communities and ALS research. Her work is a testament to the power of collaboration, cultural understanding, and a commitment to inclusivity. In a recent conversation, Judith shared her insights into the challenges and opportunities of engaging diverse communities in ALS research and her vision for a more equitable future.
Engaging Underrepresented Communities
When asked what she is doing to engage underrepresented communities with research, Judith spoke passionately about the importance of meaningful partnerships.
“As an Outreach Project Manager, my focus has been on building meaningful collaborations with organizations that serve diverse ethnic communities. These partnerships span nonprofit organizations, healthcare groups, community resource centers, federal healthcare programs (e.g., AHCCCS and Medicare), care coordinators with insurance companies, social workers, ALS-focused nonprofits, the military, and government officials,” she explained.
Judith also highlighted the role of community events in her outreach. “I have had the privilege of attending many community events tailored to the ALS community and ethnically diverse groups. These collaborations also provide expert guidance, expand our network, and lend credibility to our efforts, strengthening our connection with these communities,” she said.
Through these events, Judith and her partners create opportunities for connection and education. “For example, we co-host events where various organizations can set up informational booths and, when possible, provide mobile health units or free medical screenings. This collaborative approach increases community interest and attendance, allowing us to reach a larger and more diverse audience.”
Understanding the unique needs of these communities is critical to her work. Judith shared details about a tool her team developed to address this. “An essential component of this work involves understanding the unique needs and barriers faced by underrepresented communities in accessing ALS care. To achieve this, we have developed a Community Needs Assessment Survey aimed at identifying gaps in ALS care, support, resources, and insurance coverage.”
She added, “This survey also explores how cultural beliefs or practices may influence participation in research and care initiatives. With the help of our established partnerships, we plan to distribute the survey broadly to the Arizona ALS community and their caregivers, including family members and friends.”
Challenges in Recruiting Underrepresented Communities
Recruiting participants from underrepresented communities is not without its difficulties. Judith candidly addressed the obstacles she encounters.
“Language barriers, cultural differences, limited access to resources, and delayed or incorrect diagnoses” are among the most significant challenges, she explained.
On language barriers, she noted, “People are more likely to engage when information is presented in their native language by someone who shares their cultural background. As a Hispanic professional, I prioritize partnering with organizations that can effectively bridge these cultural and linguistic gaps to foster trust and connection within various ethnically diverse communities.”
Judith emphasized the importance of cultural sensitivity. “Understanding the beliefs, traditions, and cultural values of each community is essential. By attending community events and gathering insights through tools like the Community Needs Assessment Survey, we can develop presentations and resources that are culturally sensitive, inclusive, and respectful.”
She also addressed issues of accessibility and delayed diagnoses. “Many communities lack access to ALS-specific information, resources, or specialized providers, particularly in rural or underserved areas. Transportation challenges and geographic isolation further exacerbate these issues.” To mitigate this, Judith’s team provides “virtual presentations in native languages” and distributes accessible materials such as “flyers and brochures containing links to essential resources.”
On misdiagnoses and diagnostic delays, she added, “ALS is often misdiagnosed or diagnosed at an advanced stage due to the lack of specific testing. This can lead to unnecessary surgeries and delayed treatment, significantly impacting patients’ quality of life. To mitigate this issue, we focus on educating healthcare providers, care coordinators, and social workers.”
A Vision for Lasting Impact
Judith’s long-term goals extend far beyond outreach. When asked about the impact she hopes to achieve, her response was deeply inspiring.
“The primary goal of my outreach efforts is to establish lasting relationships and partnerships that amplify awareness of ALS and encourage participation in ALS research among underrepresented communities,” she shared.
Her vision includes making ALS education and research accessible to all. “A significant part of this vision involves offering ALS educational and research-awareness presentations in multiple languages, tailored to respect and reflect the diverse cultural backgrounds and beliefs of these communities.”
Judith also spoke about the potential ripple effects of her work. “Through this collaborative strategy, I aim to create a ‘domino effect,’ where awareness spreads organically through word of mouth, social media platforms, and diverse marketing channels.”
Finally, she shared her broader aspiration: “Ultimately, my hope extends beyond ALS. I aspire to inspire a culture of mutual support and awareness for all diseases, leveraging our collective efforts to spread hope and resilience. Hope is universal—it unites us, uplifts us, and strengthens us, no matter the challenges we face.”
Coming Together for Rare Disease Day
Judith’s efforts align perfectly with the upcoming Target ALS research event at ALS Arizona on February 28th, Rare Disease Day. This community-based pop-up clinic offers participants a chance to contribute to ALS research through a one-time blood draw.
This event, a collaborative effort to bring ALS research participation directly to underrepresented communities, reflects the principles Judith champions—accessibility, inclusivity, and meaningful engagement. By meeting people where they are, this event creates a tangible opportunity for individuals from diverse backgrounds to contribute to ALS research and be part of the broader fight against this devastating disease.
A Call to Action
Judith Chavira’s work is a powerful reminder that progress in ALS research is not just about the science—it’s about people. By fostering trust, breaking down barriers, and creating opportunities for collaboration, Judith is shaping a future where everyone can contribute to the fight against ALS.
As Rare Disease Day approaches, let us embrace her vision of hope and resilience. Together, we can include and celebrate diversity, building a future where Everyone Lives.
