Out & About: 14th Annual African American Conference on Disabilities & Chronic Health Symposium

Celebrating Advocacy, Collaboration, and Innovation: A Recap of the 14th African American Conference on Disabilities & Chronic Health Symposium

On Friday, June 13th, 2025, I had the privilege of attending the 14th Annual African American Conference on Disabilities & Chronic Health Symposium hosted by Disability Rights Arizona and the hosted by SCFAZ. at the Hyatt Regency in Phoenix. This impactful event, co-founded by Renaldo Fowler, Senior Staff Advocate at Disability Rights Arizona, and David Carey, a disability justice educator, is the only national forum addressing the critical intersection of race and disability. With an attendance of over 1,200 advocates, leaders, and community members, this year’s conference reflected a dynamic gathering of voices committed to equity, inclusion, and advocacy.

Among the event’s six specialized tracks, the Chronic Health Symposium Track, developed in partnership with the Sickle Cell Foundation of Arizona (SCFA), provided vital education and actionable solutions for addressing the challenges of sickle cell disease (SCD) and other chronic health conditions.

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Chronic Health Symposium Track: Complete Session Recap

The Chronic Health Symposium Track was a daylong deep dive into the realities of navigating chronic health issues while emphasizing actionable advocacy and awareness. Below is a summary of the sessions, in order, and the impactful speakers who led them:

Morning Sessions

1. Session: Sickle Cell Patient Population and Clinic Processes
   • Speaker: Courtney McLean, Associate Director, Diamond Children’s Hospital
   • Courtney explored opportunities to improve care pathways for pediatric SCD patients and the importance of aligning inpatient and outpatient services to provide families with continuous, high-quality care.
2. Session: Newborn Screening and Follow-Up
   • Speaker: Fran Altemeyer, BSW, Arizona Department of Health Services
   • Fran delved into the critical significance of newborn screenings, sharing how this early intervention improves the lives of children with chronic conditions by connecting families with long-term care and resources.
3. Session: Tools for Self-Advocacy
   • Speaker: Chanel Grismore, Senior Manager, Pfizer
   • Chanel presented tangible tools for building self-advocacy skills and highlighted the importance of community partnerships and policy efforts that empower individuals living with SCD.
4. Session: A Vision of Resilience
   • Speakers: Courtney Slanaker and Crystal Jackson, Red Cross Arizona
   • Courtney and Crystal emphasized how diversifying blood donor pools can better support SCD patients, particularly in underrepresented communities. Their session underlined the power of volunteerism, youth engagement, and community action.

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Lunch Program & General Sessions

The lunch program celebrated statewide and multi-sector leadership, featuring inspiring addresses from:

• Corey Woods, Mayor of Tempe: Mayor Woods spoke about the importance of positioning equity and disability advocacy at the forefront of statewide discussions about housing, healthcare, and the environment.
• Jerry McPherson, Executive Director, Arizona Commission of African-American Affairs: Jerry stressed the importance of addressing systemic barriers through economic empowerment and equitable policymaking while actively centering marginalized voices.

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Afternoon Sessions

5. Session: Shattering Stigma
   • Speaker: Sarah Spiekermeier, Interim CEO, Banner University Family Care
   • Sarah led a heartfelt discussion about the role of community education and empathy in reducing the stigma associated with SCD and other chronic conditions. She encouraged attendees to combat implicit bias in care settings and to see the patient perspective as central to systems change.
6. Session: Introduction to the 360 SCD Hub App
   • Speaker: Kevin Johnson, SCFAZ Board CTO
   • As the Board CTO for SCFAZ, Kevin introduced the 360 SCD Hub App, a user-friendly platform co-developed with The Force for Health Network. This app empowers patients by providing tools to track symptoms, vital signs, and treatments while integrating peer support features. Kevin also shared his own experience as a user of the app, emphasizing its practical benefits for anyone navigating chronic health conditions. Attendees were encouraged to download the app to access these resources.
7. Session: Shaping Possibilities
   • Panel Presenters:
     • Jordan McDowell: Focused on the transformative potential of gene therapies for SCD and the ways they’re shaping future care coming in from Vertex
     • Dr. Naomi Newman: Discussed strategies for ensuring smooth care transitions for teenagers living with SCD as they move into adulthood.
     • Dr. Angulo Pablo: Highlighted the clinical manifestations of pediatric sickle cell disease, including complications and management options.
     • Lisa Wininger, Bluebird Bio: Concluded with a forward-looking perspective on modern therapeutic innovations, providing hope and resources for patients and families navigating rare diseases like SCD.

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A Day of Community Collaboration & Partnerships

Throughout the day, the Community Partnership Village served as a hub for connection and support. Advocacy organizations like the Sickle Cell Foundation of Arizona, Red Cross Arizona, and the Force for Health Network partnered to offer resources, tools, and opportunities for ongoing action. This collaboration underscores the essential role of multi-sector partnerships in driving change and delivering impactful solutions statewide.

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Key Takeaways from the Day

1. Self-Advocacy: Multiple speakers stressed the importance of empowering patients and their families with tools, skills, and education to navigate healthcare systems confidently.
2. Collaboration Saves Lives: From diversifying blood donor pools to co-developing tools like the 360 SCD Hub App, partnerships are transforming how care is delivered for underserved communities.
3. Scientific Advancements: Gene therapy offers hope for individuals and families living with sickle cell disease, providing new opportunities for treatment and improved outcomes.
4. Addressing Systemic Barriers: Many sessions highlighted challenges such as stigma and implicit bias, emphasizing the need for continued education and training for medical providers.

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Call to Action

This event, the 14th Annual African American Conference on Disabilities & Chronic Health Symposium emphasized that our work is far from finished. Here’s how you can contribute:

• Join the 360 SCD Hub App: Become part of a supportive community. Use the app to track symptoms, access useful resources, and connect with others on a similar journey.
• Participate in the Reality Health Games: Stay tuned for this exciting initiative, designed to raise awareness and bring communities together for action and advocacy.

Together, we can continue the vital conversations sparked during this remarkable event and work toward building a healthier, more equitable future.

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