Her Fight Continues
She raised six children while fighting an illness the world could not see. She never stopped. She never asked for credit. She just fought.
Lavette Renee Butts lived with Lupus for years. Not quietly. Not without pain. But with a dignity and strength that her children will carry for the rest of their lives. This pillar is built in her honor, and in the name of the 1.5 million Americans fighting the same fight today.
Understanding the Disease
Lupus is a chronic autoimmune disease where the immune system, the part of the body designed to protect you, turns against itself. Instead of fighting outside threats, it attacks healthy tissue. Joints, skin, kidneys, heart, lungs. Any organ can become a target.
There are several types of Lupus, but the most common is Systemic Lupus Erythematosus, known as SLE. It is the form that causes the wide range of symptoms most people associate with the disease. And it is the form that most directly affects the communities we serve in the Inland Empire.
What makes Lupus especially difficult is how unpredictable it is. Some days feel almost normal. Then a flare comes, triggered by stress, sun, illness, or nothing you can identify, and suddenly everything falls apart. Joint pain that makes it hard to get out of bed. Exhaustion that no amount of sleep fixes. Rashes. Swelling. Brain fog.
"You look fine" is one of the most isolating things you can say to someone with Lupus. Most of the damage happens on the inside, where nobody can see it.
Lupus has no cure. It is managed, not beaten. That means the people living with it are fighting every single day, for the rest of their lives. Renee knew that. Her children watched her do it.
The Racial Disparity
Black women are 2 to 3 times more likely to develop Lupus than white women, and they typically experience more severe forms of the disease. Hispanic, Asian, and Indigenous women are also disproportionately affected. This is not coincidence. It reflects decades of health care inequality that the RENEE Foundation is committed to addressing directly in our community.
By the Numbers
1.5 million Americans are currently living with Lupus, with 16,000 new cases diagnosed each year.
90% of Lupus patients are women, most diagnosed between ages 15 and 44, during prime caregiving and career years.
Nearly 6 years is the average time it takes to receive a correct Lupus diagnosis after symptoms begin.
Kidneys are damaged in about 50% of Lupus patients. Early detection and treatment make all the difference.
No single test can diagnose Lupus. It often takes a rheumatologist and multiple rounds of blood work, imaging, and observation to confirm.
Flares and remissions make Lupus especially hard to manage. Stress, sun exposure, infection, and some medications can all trigger a flare.
She never made us feel the weight of what she was carrying. She just showed up. Every single day.
- Shareece Wright | Son | RENEE Foundation Founder
In Her Name
Lavette Renee Butts did not fight Lupus in a vacuum. She fought it while raising six kids on her own. While making sure everyone had what they needed. While being present at school events, meals, milestones. While pretending, for the sake of her children, that today was a good day when it was not.
That is what Lupus looks like in real life. Not in a clinical trial. Not in a brochure. It looks like a mother who gets up when her body says stay down. It looks like someone who manages the pain, manages the fatigue, manages the uncertainty, and still manages to raise children who know how to fight.
Renee's Lupus brought with it everything the disease brings: joint pain that showed up uninvited, fatigue that went bone-deep, the butterfly rash that is both hallmark and heartbreak. And through it all, she moved. She cooked. She drove. She attended. She loved.
Six children. One mother. Lupus the whole time. This is the woman this foundation is named after. This is what strength actually looks like.
The Purple Butterfly Initiative, the support programs, the research grants, all of it is built on the foundation of what she demonstrated every day. She did not need a cure to be a warrior. She just needed her family to remember.
We remember.
Annual Community Event
The butterfly is the international symbol of Lupus. It represents the butterfly-shaped rash across the cheeks and nose that is one of Lupus's most recognized signs. But for the RENEE Foundation, the butterfly means something more. The butterflies in our logo are Renee's children and grandchildren, still flying because of the wings she gave them.
Why the Butterfly
In the Lupus community, the purple butterfly is a badge of solidarity. The butterfly-shaped rash, called a malar rash, appears across the bridge of the nose and cheeks during flares. It became the symbol adopted by advocates worldwide. For the RENEE Foundation, the symbol carries double meaning: Lupus awareness, and the living legacy of Lavette Renee Butts through her children and grandchildren. Six large butterflies in our logo represent her six children. Seven smaller ones below them represent her seven grandchildren.
Lupus Awareness Month
May is Lupus Awareness Month, recognized nationally and internationally. Each May, the RENEE Foundation anchors its Lupus programming around a full month of education, community outreach, and the annual Purple Butterfly Walk. We wear purple. We tell Renee's story. We raise money for research.
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Large butterflies represent Renee's children
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Smaller butterflies represent her grandchildren
May
Annual walk during Lupus Awareness Month
$50K
Year 1 fundraising goal for research
RENEE Foundation Annual Event
Purple Butterfly Walk
Community Programs
No one should navigate Lupus alone. Not in the Inland Empire. Not anywhere. The RENEE Lupus Support Program connects patients, caregivers, and families to the resources, specialists, and community they need to manage this disease with dignity.
We built these programs because Renee navigated this largely without a safety net. She figured it out through sheer will. We want to make it easier for the next family that gets this diagnosis.
Monthly
Support groups meet every month for patients and caregivers across the Inland Empire
Regular group sessions for people living with Lupus and their family members. Facilitated by trained community advocates. A space to be honest about how hard this is, and to hear that you are not alone.
Separate sessions designed specifically for the people caring for someone with Lupus. Caregivers carry an enormous load. This is a place built just for them: to rest, to talk, to get tools that make the role sustainable.
We connect patients to rheumatologists and specialists right here in the Inland Empire. No one should have to drive to LA to get proper care. We help navigate referrals, appointments, and the often-confusing specialist network in our region.
Lupus medications can be expensive. Biologics, antimalarials, steroids: the bills pile up fast. Our team helps patients access patient assistance programs, manufacturer discounts, and foundation grants that can bring medication costs down or eliminate them entirely.
Lupus qualifies as a disability under Social Security guidelines for many patients. We provide navigation assistance for SSDI applications, short-term disability claims, insurance appeals, and understanding what your policy actually covers when Lupus flares.
For families facing particularly complex situations, including hospital stays, flare management, workplace accommodations, or housing instability connected to Lupus, we provide one-on-one advocacy. Real people helping real families navigate the system.
National & Local Research
Renee deserved a cure. The people living with Lupus today deserve a cure. We are working with the organizations closest to finding one, and we are funding the research directly from right here in the Inland Empire.
Lupus Foundation of America
The nation's leading health organization dedicated to improving the quality of life for all people affected by Lupus. The RENEE Foundation is proud to align with the LFA's research mission and education programs. Visit lupus.org for resources, clinical trial information, and community support tools.
Alliance for Lupus Research
One of the largest private funders of Lupus research in the United States. The RENEE Foundation supports the ALR's mission and directs a portion of Purple Butterfly Walk proceeds toward their research grant programs.
Loma Linda University Medical Center
Our primary regional medical research partner right here in the Inland Empire. Loma Linda's Rheumatology division is one of the leading autoimmune research centers in Southern California. We work with them to connect our community to clinical trials, specialist care, and emerging treatments.
Clinical Trial Awareness Initiative
Many Lupus patients never hear about clinical trials that could directly benefit them. The RENEE Foundation bridges that gap, connecting eligible patients to trials at Loma Linda and other partner institutions, and providing plain-language education about what participation means.
RENEE Foundation Annual Research Grant
$10,000
Starting in Year 1, the RENEE Foundation will award an annual seed grant of $10,000 toward Lupus research. This is our direct investment in finding a cure. Not a pledge. Not a future commitment. A check, every year, in Renee's name.
Education Initiative
Shareece coaches the varsity secondary at Aquinas High School in San Bernardino. He sees every day what students carry into the classroom. Some of them are living with invisible illness. Some of them have a parent, grandparent, or sibling battling autoimmune disease. They need language for what they are experiencing, and so do their classmates.
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We bring curriculum into Inland Empire schools that explains, in plain and relatable terms, what autoimmune disease is and how it affects people. No medical jargon. Real language. Real stories. We want students to understand why a classmate might not be able to sit in the sun, why some kids miss more school, what invisible illness actually looks like.
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One of the most damaging things about Lupus and other invisible illnesses is the social isolation that comes from not being believed. Students with Lupus hear "you look fine" from peers, teachers, and coaches. Our program teaches all students to extend grace when they cannot see what someone is fighting. This is character education with real-world stakes.
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Every May during Lupus Awareness Month, we invite high school and college students to volunteer with the Purple Butterfly Walk and RENEE Foundation events. Students earn community service hours, gain exposure to health advocacy, and become part of a cause that extends beyond themselves. Leadership is learned by doing it. We give them somewhere to show up.
Recognize It Early
Lupus is notoriously difficult to diagnose, often mimicking other diseases. The earlier it is caught, the better the outcomes. If you or someone you love is experiencing several of these symptoms together, it is worth talking to a doctor about Lupus specifically.
Butterfly Rash
A flat or raised rash across the nose and cheeks, shaped like a butterfly. One of the most recognizable hallmarks of Lupus. Often appears after sun exposure.
Joint Pain & Swelling
Persistent pain, stiffness, and swelling in joints, particularly in the hands, wrists, and knees. Often worse in the morning and can shift from joint to joint.
Extreme Fatigue
Not regular tiredness. Bone-deep exhaustion that does not improve with rest. Many Lupus patients say fatigue is their most debilitating symptom, making it impossible to function normally.
Sun Sensitivity
Even brief sun exposure can trigger a Lupus flare or worsen an existing one. Photosensitivity leads to rashes, fatigue, and joint pain after time outdoors. Many patients must limit their sun exposure significantly.
Hair Loss
Hair thinning or loss, often in patches or across the scalp, is common in Lupus. It can be caused by the disease itself or by the medications used to treat it. For many patients, this is one of the most emotionally difficult symptoms.
Kidney Problems
Lupus nephritis, kidney inflammation caused by Lupus, affects about half of all patients. Symptoms include swelling in the legs, blood in urine, and changes in urination patterns. Untreated, it can lead to kidney failure.
Chest Pain / Shortness of Breath
Inflammation from Lupus can reach the lining around the lungs or heart, causing chest pain when breathing deeply. This is a serious symptom that warrants immediate medical attention.
Brain Fog & Headaches
Cognitive difficulties, memory problems, difficulty concentrating, and persistent headaches are common in Lupus. Sometimes called "lupus fog," this symptom can make it difficult to work, study, or manage daily tasks.
Lupus Resources
These are the organizations and resources we trust. Bookmark these. Share them. If you or someone you love is dealing with Lupus in the Inland Empire, these are your starting points.
Lupus Foundation of America
lupus.org
The national leader in Lupus education, advocacy, and research. Find clinical trials, local chapters, support groups, and the most current medical information on Lupus diagnosis and treatment.
Alliance for Lupus Research
lupusresearch.org
One of the largest private funders of Lupus research in the world. Learn about funded research programs, upcoming grants, and how your donation directly accelerates the search for a cure.
Loma Linda University Rheumatology
lluh.org/services/rheumatology
Our primary IE medical partner for specialist connections. Loma Linda's Rheumatology department specializes in autoimmune disease, including Lupus. Serving the Inland Empire and surrounding communities.
Local IE Support Groups
lupus.org/resources/support-groups
The Lupus Foundation of America maintains a directory of local support groups. Find groups meeting in San Bernardino, Riverside, and surrounding Inland Empire communities. Or join a RENEE Foundation group through our program.
Disability Rights & SSDI Information
ssa.gov/disability
Social Security Disability Insurance information for Lupus patients whose condition limits their ability to work. The RENEE Foundation also provides one-on-one navigation assistance for SSDI applications. Contact us to get started.
NeedyMeds: Medication Assistance
needymeds.org
A database of patient assistance programs, drug discount cards, and free clinic resources. If Lupus medication costs are a barrier, start here. The RENEE Foundation can also help you navigate what programs you qualify for.
Join the Movement
Renee did not fight alone. Her six children were right there. Her community was there, even when it did not know she needed them. That is what we are building with this pillar: a community that shows up for each other.
Whether you want to walk in May, volunteer at an awareness event, make a donation in Renee's name, or share your own Lupus story with our community, we want to hear from you. There is a place for you here.
Contact the RENEE Foundation / Lupus Pillar
Year 1 Targets
Renee did not have the luxury of waiting for someone else to help her. She built her family with what she had. We are building this pillar the same way: concrete goals, real commitments, and accountability to the community we serve in the Inland Empire.
$50,000
Total research fundraising goal from the Purple Butterfly Walk and community donations
$10,000
Annual RENEE Foundation research seed grant awarded to a Lupus research institution
200+
Community members connected to Lupus support programs and specialist resources
12
Monthly support group sessions held for Lupus patients and caregivers across the IE
500+
Students in IE schools reached through age-appropriate Lupus and autoimmune awareness education
50+
Families connected to specialist referrals and medication assistance navigation through the RENEE program
1
Purple Butterfly Walk: the first annual community walk for Lupus awareness in the Inland Empire
2+
Clinical trial awareness campaigns connecting eligible IE patients to Loma Linda and partner research institutions