Empowering Purpose. Inspiring Possibility.
Empowering Purpose. Inspiring Possibility.
Behind every rainbow is a storm worth surviving.
Our Mission
Our Mission
Rooted in Purpose. Driven by Impact.
Rooted in Purpose. Driven by Impact.
The Lupus Rainbow exists to raise awareness, provide education, and offer community support for individuals impacted by Lupus — with a special focus on Neuropsychiatric Lupus (NPSLE) and Amyloidosis.
We believe in teaching, storytelling, and showing up for people who are often overlooked, misdiagnosed, or told “it’s all in your head.”
Meet Our Founder: Jennifer Harper
Meet Our Founder: Jennifer Harper
Lupus warrior. Survivor. Educator. Advocate.
Lupus warrior. Survivor. Educator. Advocate.
Jennifer created The Lupus Rainbow after living through the pain, confusion, and silence of an NPSLE diagnosis — and later, facing the added challenge of Amyloidosis, a rare complication that can cause severe organ damage in people with chronic autoimmune diseases like Lupus.
From hospitalizations to healing, she now shares her journey to help others recognize early signs, find the right support, and know they are not alone.
“When you live with Lupus, it’s not just one illness. It’s layers of challenges. I want to help others understand what’s really going on inside their bodies — and how to advocate before it’s too late.”
Board of Directors Members
Board of Directors Members
The Board of Directors at The Lupus Rainbow provides the strategic vision, accountability, and leadership needed to ensure our mission thrives. Each member brings unique strengths, lived experience, and a shared passion for improving the lives of those impacted by Lupus and NPSLE.
Jennifer Harper
Jennifer Harper
Founder & Executive Director
Lupus warrior, advocate, and educator
Leads The Lupus Rainbow’s vision and voice
Oversees strategy, storytelling, and outreach
Name
Name
Board Chair
Provides strategic guidance and board leadership
Supports compliance and long-term vision
Oversees executive-level decision-making
Anya Lumpkin-Queen
Anya Lumpkin-Queen
Director of Events & Community Engagement
Oversees all virtual and in-person events
Leads marketing, website development, and social media strategy
Builds visibility and connection through community-facing initiatives
Name
Name
Secretary
Maintains records and board communications
Tracks meetings, resolutions, and policies
Supports governance and reporting
Name
Name
Programs & Impact Lead
Oversees the success and alignment of initiatives
Tracks outcomes for community support services
Advises on new project development
Name
Name
Treasurer
Manages financial planning and transparency
Advises on budgeting and nonprofit operations
Ensures responsible use of funding and donations
Board of Advisors Members
Board of Advisors Members
Our Advisory Board includes medical professionals, patient advocates, and community leaders who guide our educational outreach, medical content, and community partnerships. Their insights ensure our work is both personal and professionally grounded.
Name
Name
Clinical Rheumatologist – Lupus Research Advisor
Guides medical accuracy of educational content
Helps translate clinical research for patient-friendly use
Advises on lupus care standards
Name
Name
Neuropsychiatrist – NPSLE Education Specialist
Offers insight into brain-related lupus symptoms
Reviews NPSLE-related materials and guides
Supports early awareness efforts
Name
Name
Lupus Warrior Advocate
Shares lived experience to inform programming
Ensures messaging stays patient-centered and authentic
Supports storytelling and blog initiatives
Name
Name
Transplant Health Advisor (Kidney or Organ Specialist)
Advises on kidney failure, dialysis, and transplant topics
Ensures accurate education around long-term organ health
Provides support materials for pre/post-transplant patients
Name
Name
Licensed Mental Health Professional
Guides mental health language and tone
Supports development of self-care and wellness tools
Advises on trauma-informed approaches
Name
Name
Community Outreach Coordinator
Leads local event strategy and partnerships
Connects The Lupus Rainbow with underserved communities
Offers insight on grassroots outreach
Name
Name
Wellness Leader
Brings a spiritual/emotional lens to our mission
Supports content that uplifts and encourages
Offers compassionate insight for support programs
Join the Board
Join the Board
We are looking for people like you!
Want to serve? We’re building a bold, inclusive advisory team
Share your voice and help shape our mission
You can apply by clicking the link below
Nominate an Advisor
Nominate an Advisor
We are looking for advisors.
Know a powerful voice that should be on our team?
Nominate a professional, advocate, or leader
Nominate Someone by clicking the link below
Here’s a clear and simple breakdown of the main types of Amyloidosis, especially the ones most relevant to Lupus patients or people with chronic inflammation.
🧬 Types of Amyloidosis Amyloidosis isn’t just one condition — it’s a group of disorders caused by different abnormal proteins that build up in the body. Each type affects the body differently depending on where the protein comes from and where it gets deposited.
🔹 1. AL (Light Chain) Amyloidosis Cause: Abnormal plasma cells produce excess light chain proteins
Commonly Affects: Heart, kidneys, liver, nerves Seen In: Blood cancers like multiple myeloma, but not typically linked to Lupus
Treatment: Similar to chemotherapy for blood cancers
🔹 2. AA (Secondary) Amyloidosis Cause: Chronic inflammation triggers liver to produce too much serum amyloid A (SAA) protein
Commonly Affects: Kidneys, liver, spleen, GI tract Seen In: Lupus, rheumatoid arthritis, IBD, chronic infections
Treatment: Focus on managing the underlying condition (e.g., Lupus)
✅ This is the form most relevant to Lupus patients.
🔹 3. ATTR (Transthyretin) Amyloidosis Cause: Abnormal or mutated transthyretin protein made in the liver
Commonly Affects: Heart and nerves Seen In: Older adults (age-related), or as a genetic condition
Treatment: Specialized medications or liver transplant in hereditary cases
🔹 4. Dialysis-Related Amyloidosis Cause: Build-up of beta-2 microglobulin in people on long-term dialysis
Commonly Affects: Joints and bones
Seen In: Patients with chronic kidney disease on dialysis
Treatment: Kidney transplant or switching dialysis methods
🔹 5. Hereditary Amyloidosis (Familial) Cause: Inherited gene mutations causing abnormal protein production
Commonly Affects: Varies based on mutation
Seen In: Specific ethnic groups (e.g., African, Portuguese, Swedish)
Treatment: Depends on subtype; may include organ transplant or gene-targeting therapies
💡 Summary for The Lupus Rainbow Site For your audience, AA Amyloidosis is the one to focus on — it’s the type that can happen as a complication of Lupus, due to long-term inflammation or organ involvement (especially kidneys).
Want help turning this into: A chart or infographic for your Resources page? A blog-style breakdown for your education section? A simplified fact sheet download? Let me know how you'd like to use it.
You said:What is the wild cat?ChatGPT said:Great question — you're likely referring to the “wild-type ATTR amyloidosis”, often called “Wild-type ATTR” or casually, “the wild cat” in some clinical settings.
Here’s a simple breakdown:
🧬 Wild-type ATTR Amyloidosis (aka the “Wild Cat”) Full Name: Wild-type Transthyretin Amyloidosis (ATTRwt) Nickname: “Wild cat” (a play on “wild-type ATTR”) — especially in cardiology circles
🔹 What It Is: A form of ATTR amyloidosis that happens without a genetic mutation — meaning it’s not inherited, but rather develops as people age.
🔹 Who It Affects: Typically men over 60 Often underdiagnosed Sometimes misdiagnosed as “age-related heart failure” or carpal tunnel syndrome
🔹 Symptoms: Shortness of breath Swelling in the legs Irregular heartbeat (from heart involvement) Carpal tunnel symptoms Back or spinal stiffness
🔹 How It’s Different: Unlike hereditary ATTR, it’s not genetic The protein causing damage is still transthyretin, made by the liver It mostly affects the heart — leading to restrictive cardiomyopathy (stiff heart muscle)
🔹 Treatment: Tafamidis (Vyndamax) is the first FDA-approved drug for wild-type ATTR Other stabilizers or gene-silencing drugs are in development Early diagnosis is key — untreated, it can lead to serious heart failure
💡 For The Lupus Rainbow Site: You might include wild-type ATTR only briefly under “Other Forms of Amyloidosis,” just to differentiate it from AA amyloidosis, which is more relevant to Lupus patients. Would you like a sentence or two to add under the Amyloidosis education section for clarity?