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More About LLA
Warriors Thrive Initiative
Flagship Program
The Problem We Are Solving
Lupus affects approximately 1.5 million Americans, yet it remains one of the most underfunded and poorly understood chronic illnesses in the country. For Black women in particular, the disease trajectory is steeper. They tend to develop lupus at younger ages, experience more organ involvement, and receive diagnoses later than their white counterparts due to longstanding inequities in how their symptoms are evaluated and treated.
Beyond the medical dimension, lupus creates profound social and emotional isolation. The unpredictable nature of flares makes it difficult to maintain employment, relationships, and community ties. Support groups that understand the cultural and personal experience of living with lupus in an underserved community are not widely available in Northeast Ohio. The Lupus Foundation of America's Greater Ohio Chapter operates statewide, but LLA is positioned to serve the community at the neighborhood level, with programming that is personal, culturally grounded, and ongoing.
Program Description
Quarterly Wellness Retreats (4 per year)
Four times a year, LLA hosts a full-day Warrior Wellness Retreat for registered participants. Each retreat brings together 40 to 60 lupus warriors in a structured environment that combines peer connection, wellness education, and rest. Retreats are held at community partner facilities in the Streetsboro area and are provided at no cost to participants.
Each retreat includes a health education session led by a guest clinician or specialist, a facilitated peer sharing circle, a movement and mindfulness activity, and a nutritional component (catered meal aligned with anti-inflammatory dietary principles). Participants receive a take-home wellness kit that includes printed educational materials, a resource directory, and a journal for tracking symptoms and wellness goals.
Retreat themes rotate each quarter and address the phases of living with lupus: diagnosis and acceptance, managing flares and daily life, navigating the healthcare system, and building resilience and community.
Monthly Peer Support Groups (12 per year)
Four times a year, LLA hosts a full-day Warrior Wellness Retreat for registered participants. Each retreat brings together 40 to 60 lupus warriors in a structured environment that combines peer connection, wellness education, and rest. Retreats are held at community partner facilities in the Streetsboro area and are provided at no cost to participants.
Each retreat includes a health education session led by a guest clinician or specialist, a facilitated peer sharing circle, a movement and mindfulness activity, and a nutritional component (catered meal aligned with anti-inflammatory dietary principles). Participants receive a take-home wellness kit that includes printed educational materials, a resource directory, and a journal for tracking symptoms and wellness goals.
Retreat themes rotate each quarter and address the phases of living with lupus: diagnosis and acceptance, managing flares and daily life, navigating the healthcare system, and building resilience and community.
Annual Lupus Awareness Walk
Each year, LLA hosts its Lupus Awareness Walk at a local park or recreation center. The walk serves both as a fundraising event and a public visibility campaign. Participants register individually or in teams, with fundraising pages tied to the event. The walk includes a resource fair, live music, and vendor tables from healthcare organizations, nutrition providers, and wellness practitioners. A brief program honors lupus warriors and features Alicia Duncan's testimony as a survivor and advocate.
The walk serves a secondary function as a pipeline: many first-time participants become ongoing support group members or retreat attendees after their initial exposure at the walk.
Target Population
Program Outcomes and Measurement
The Warriors Thrive Initiative tracks outcomes at three levels: individual participant change, program delivery, and organizational health. Data collection uses a pre and post survey administered at retreats, a sign-in log system for support groups, a post-event satisfaction survey for the annual walk, and a quarterly report compiled by program staff.
Program Budget
The Warriors Thrive Initiative is designed to operate within a realistic budget for a first-year or second-year nonprofit. The budget below reflects a full 12-month program cycle and shows both the grant request amount and the organizational match LLA contributes through in-kind venue partnerships, volunteer time, and existing operational resources.
Know Lupus Community Education Initiative
Program Components
Lupus Awareness Certification Workshops
LLA offers a half-day Lupus Awareness Certification Workshop designed for employers, educators, school counselors, social workers, and healthcare adjacent professionals. The workshop covers what lupus is and how it presents, the particular experience of Black women with lupus, common workplace and school-based challenges faced by lupus warriors, and how to provide supportive accommodations and referrals. Participants receive a certificate of completion and a resource packet they can keep in their professional environment.
Workshops are offered four times per year at local business or organizational facilities. LLA charges a nominal registration fee of $25 to $50 per participant for non-community members to contribute to sustainability, while community members attend at no cost.
Community Seminars
Two times per year, LLA hosts a free Community Lupus Seminar open to any member of the public. These two-hour events take place at a library, church, or community center and feature a panel of speakers that includes a medical professional, a lupus warrior, and an LLA representative. Topics rotate based on community interest and emerging research, and may include diagnosis and early signs of lupus, nutrition and lifestyle adjustments, navigating the disability and insurance system, and mental health resources for chronic illness.
Community seminars serve as a major public-facing visibility event for LLA and a consistent source of new participants for the Warriors Thrive Initiative.
Train-the-Trainer Program
LLA recruits a cohort of five to eight community volunteers annually who complete an extended version of the certification workshop and are then equipped to facilitate lupus awareness presentations independently in their own networks: churches, schools, workplaces, and community organizations. Each trained facilitator commits to delivering a minimum of two presentations during the program year with LLA's support materials. This extends LLA's educational reach far beyond what the core staff team can deliver directly.
Logic Model: Know Lupus Community Education
Outcomes and Measurement
Program Budget
Warrior Wellness Navigation Program
Program Components
Intake and Assessment
New participants complete a brief intake form that documents their current healthcare situation, insurance status, pressing needs, and goals. A navigator reviews the intake and schedules an initial one-on-one conversation, either in person or by phone, to discuss the participant's priorities and develop a 90-day navigation plan.
One-on-One Navigation Support
Each navigator carries a caseload of 8 to 12 participants at a time. Navigators meet or speak with their participants at least twice per month and are available for urgent calls when participants are preparing for medical appointments, dealing with insurance denials, or facing a crisis related to their care. Navigator activities include helping participants complete assistance program applications, accompanying participants to appointments when requested, researching local and national resources for lupus patients, and connecting participants with legal aid, disability services, or social service agencies as needed.
Resource Directory and Self-Service Tools
LLA maintains and annually updates a Northeast Ohio Lupus Resource Directory that lists healthcare providers experienced with lupus, financial assistance programs, insurance navigators, mental health services, and community organizations. The directory is available in print and digital format and is distributed at all Warriors Thrive events. Participants in the navigation program receive a personalized resource package drawn from the directory based on their specific circumstances.
Logic Model: Warrior Wellness Navigation
Outcomes and Measurement
Program Budget
How These Three Programs Work Together.
These three programs are not independent silos. They are designed to function as a coordinated continuum of support that meets lupus warriors wherever they are in their journey.
A person newly diagnosed with lupus might first encounter LLA at a Know Lupus community seminar. From there, she joins the Warriors Thrive support group. When she faces a coverage denial or needs help finding a rheumatologist, she enters the Warrior Wellness Navigation program. By the time she attends her first wellness retreat, she is no longer navigating lupus alone. That is the system LLA is building.
Combined Annual Reach
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