A treatment can only be administered for a known disease. Too few people, including physicians, do not know amyloidosis exists. That change began for the Reverend Elveria Glover, Ph.D. on August 22, 2025. The day she lost her mother, Bishop Bernita Rivers Smalls, Ph.D. to a lack of amyloidosis awareness. Amyloidosis disproportionately affects Black Americans, yet it remains one of the most overlooked diseases in modern medicine. Every symptom dismissed as “just getting older” is a chance for an earlier diagnosis lost. “I can’t,” she cried, “let this happen to another family.”
A Daughter's Vow
Why I Started This Campaign
On August 22, 2025, I lost my mother, Bishop Bernita Rivers Smalls, Ph.D., to a disease none of her doctors had ever named. For over two and a half years, she was treated for heart disease. It wasn't until the final two weeks of her life that our family learned the truth: amyloidosis, a rare but treatable disease, had been silently progressing the entire time.
A treatment existed. My mother simply never had the chance to receive it, because no one knew to look for the disease that was taking her life.
I founded The Bernita Rivers Awareness Foundation so that no other family experiences what mine did — watching someone they love fight the wrong battle because the right diagnosis came too late. My mother's legacy will not be silence. It will be every person who learns this disease exists, and every life that knowledge goes on to save.
Bishop Bernita Rivers Smalls, Ph.D. Beloved mother, pastor, friend, and the inspiration for this campaign.
The Story Behind the Campaign
We learned too late that a treatment existed.
Amyloidosis is called “the great imitator” because its symptoms look like heart disease, kidney disease, depression, anxiety, or simply growing older. Because it hides in plain sight, patients are often treated for the wrong condition while the disease continues to damage vital organs. By the time the right name is spoken, it can be too late for life-saving treatment.
It was too late for Bishop Dr. Bernita Rivers Smalls. This campaign exists so it will not be too late for you, or your loved ones. Her story is shared to save lives.
Know the warning signs
Earlier diagnosis begins with recognition. See your doctor and ask about amyloidosis by name if you or a loved one experience the following symptoms, especially when they persist or worsen despite treatment:
- Persistent fatigue that doesn't improve with rest
- Shortness of breath
- Swelling of the legs, ankles, or abdomen
- Unexplained weight loss
- Numbness or tingling in the hands and feet
- Heart rhythm problems or heart failure
- Kidney problems or protein in the urine
Eighteen months of asking to be heard
For nearly eighteen months, Bishop Smalls repeatedly told her physicians that something was wrong. After receiving a pacemaker, she continued to experience overwhelming fatigue, difficulty breathing, swelling in her legs and abdomen despite taking Lasix, unexplained weight loss, and worsening heart problems. Again and again, she said she was not getting better — she knew something more serious was happening to her.
When her family asked why she needed a pacemaker, they were given no clear explanation. Instead, her age of seventy-seven was emphasized. While her symptoms worsened, she was told to accept getting older, slow down, and rest more. But she was already resting. She had no strength or energy left to do anything else.
Through multiple admissions at St. Joseph's Hospital and Candler Hospital in Savannah, Georgia, she kept seeking answers. Blood work revealed a slight buildup of protein, but no diagnosis was made. Rather than further investigation, her symptoms were attributed to depression and anxiety, and she was prescribed Escitalopram, even as her physical condition continued to decline.
Every one of those eighteen months mattered. This is the first lesson of her story: when symptoms persist and worsen, time lost is organ function loss.
The long road to a diagnosis
After nearly a year and a half, physicians began testing for amyloidosis. Her testing journey holds the campaign's most urgent medical lesson: a negative test does not rule this disease out.
- Fat pad biopsy — a sample of abdominal fat was examined for amyloid deposits. Negative.
- CT scan — imaging showed bone spurs but did not identify the cause of her decline.
- Bone marrow biopsy — also negative for amyloidosis.
- Heart (endomyocardial) biopsy — because of the severity of her symptoms, she was transferred to Piedmont Atlanta Hospital for a heart biopsy. The initial report was negative. The sample was then sent to the Mayo Clinic for specialized analysis. The next day, the family learned that the Mayo Clinic had confirmed amyloidosis.
She and her daughter were told the disease had progressed too far. It was too late for life-saving treatment.
Three negative tests were not the end of the story. Specialized analysis found what standard testing missed. If amyloidosis is suspected, persistence and expert review are not optional — they are the difference between a diagnosis in time and a diagnosis too late.
What we ask of healthcare professionals
- Listen when patients say something doesn't feel right.
- Look beyond age when symptoms continue to worsen.
- Consider amyloidosis and other rare diseases when symptoms remain unexplained.
- Continue searching for answers when standard treatments fail.
- Pursue specialized testing and expert pathology review.
- Remember that initial negative biopsies do not rule out amyloidosis.
What we ask of patients and families
- Trust your instincts. You and your loved ones know your body best.
- Advocate for yourself and for those you love.
- Ask questions and keep asking until the answers explain what you are living through.
- Request additional testing or a second opinion when symptoms persist.
- Learn the warning signs of amyloidosis and share them.
Her legacy lives through awareness
Every conversation can lead to an earlier diagnosis. Every person educated about amyloidosis may help save a life. Every healthcare provider who pauses to truly listen may change the outcome for another family.
Bishop Dr. Bernita Rivers Smalls' voice may be silent, but her legacy continues to speak. The Bernita Rivers Awareness Foundation is committed to raising awareness, educating communities, supporting families, and advocating for earlier diagnosis — so that no family must contend with these words for the rest of their lives: “If only we had known sooner.”
Because being rare should never mean being overlooked.
“Her life was a blessing. Her story is a lesson. Her legacy is a mission to save lives.”
A Friend's Promise
Amyloidosis Took My Best Friend
Velma & Bernita, freshman year at Savannah State University — the beginning of a lifelong friendship.
On August 22, 2025, ATTR-cardiac amyloidosis took my best friend, her daughter's mother, and left our family and friends heartbroken. It was too late to help my friend survive the assault of amyloidosis once this rare but treatable disease was finally diagnosed.
Her daughter, the Reverend Dr. Elveria Glover, wants us and you to join her national awareness campaign to ensure that no other families or friends lose a loved one to amyloidosis, or experience the sense of loss that we live with every day because we learned of the existence of amyloidosis too late.
There has not been a day since my friend's homegoing that I haven't thought about, cried, or laughed out loud at memories of joy, sadness, and screaming laughter from her crack-you-up sense of humor.
We met on the first day of Mr. Holt's freshman English class at Savannah State University.
“Everybody can’t coordinate an outfit around green shoes,” she said as I walked in.
Got to work—with what I got, I replied.
“You’re working it,” she said, still looking at my feet, as I sat in the desk next to her.
We chuckled, learned each other's names, and that our schedules were almost the same except for one class. We had arrived early to begin our first day of college matriculation in the winter semester, rather than in September, like most other freshmen, who were starting their second semester.
Walking to our next class, we decided the time and where in the student center we would meet the next day. We have never not been friends since.
It wasn't long before I learned that she was way more outgoing than I—and was also smart, perceptive, and a bona fide fashionista who became my first mentor outside of my family.
Pastor, as I still call her, would want us to help Vera ensure that other families are given the information to help their loved ones survive this disease by sharing the name of the disease: ATTR-cardiac amyloidosis. And by becoming an ambassador against this disease by visiting the Bernita Rivers Awareness Foundation website for more information.
Find Your Path
How Are You Connected to Amyloidosis?
Choose the path that fits you best, and we'll point you to what matters most.
The Health Crisis
An Unrecognized Pandemic in the Black Community
ATTR-CM — the form of amyloidosis that most affects Black Americans — is devastating, underdiagnosed, and largely unknown. These numbers represent lives.
The population most at risk of undiagnosed ATTR-CM.
The population most at risk of undiagnosed ATTR-CM.
Why This Affects You
A Treatable Disease Most Black People Don't Know Exists
Amyloidosis is frequently misdiagnosed as aging, common heart failure, or other cardiac conditions. Physicians who don't know the disease exists cannot test for it — so patients spend years receiving treatment for the wrong condition.
The V142I variant — found almost exclusively in people of West African descent — is concentrated in the Black American community. In Black men over 75, it may be responsible for 1 in 5 cases of heart failure. Yet most cardiologists never run the tests that could confirm it.
An approved treatment exists. But a treatment can only be applied to a known disease.
59% of patients report their diagnosis was delayed. Nearly half attribute this delay to lack of provider awareness — not their own.
Take Action
Five Ways to Help Right Now
Every person who learns this disease exists could be the reason someone else survives it.
Join the Campaign
Sign up below and add your name to the growing movement. Share your story if amyloidosis has touched your family.
Share on Social Media
Use #AmyloidosisExists and share this campaign with your community, especially in faith networks and Black communities.
Talk to Your Doctor
If you are a Black man or woman over 60 with unexplained heart failure, ask your cardiologist: "Could this be amyloidosis?"
Host an Awareness Event
Bring the campaign to your church, barber shop, community center, or health fair. We will provide materials.
Request Genetic Screening
Black adults over 60 with heart failure symptoms can request V142I genetic testing. Ask your provider about screening options.
Join the Campaign
Add Your Voice
Sign up to stay informed, receive campaign updates, and connect with others fighting to ensure no more families learn about amyloidosis too late.
🙏 Thank you for joining.
You are now part of the Bernita Rivers Awareness Foundation. Together, we will ensure that no other family learns about this disease too late.
Common Questions
What Everyone Should Know About Amyloidosis
For Healthcare Providers
Closing the ATTR-CM Diagnostic Gap
Transthyretin cardiac amyloidosis is underdiagnosed at a massive scale — particularly in Black patients. This section provides clinical tools to help you recognize and act on ATTR-CM earlier.
Clinical Overview: ATTR-CM
- Progressive cardiomyopathy caused by misfolded transthyretin (TTR) protein depositing in the myocardium
- Two subtypes: wild-type (wt-ATTR-CM, predominantly in men over 65) and variant (V142I-ATTR-CM, hereditary, disproportionately affecting Black Americans)
- Often presents as heart failure with preserved ejection fraction (HFpEF)
- Frequently misdiagnosed as hypertensive heart disease, hypertrophic cardiomyopathy, or "diastolic dysfunction"
- V142I allele present in ~3.9% of Black Americans — 14% of Black patients with heart failure
- In Black men over 75, ATTR-CM prevalence in HF patients may reach 20%
The Diagnostic Gap — By the Numbers
- Median time from first symptom to diagnosis: 2.7 years
- Average of 5+ physician visits before correct diagnosis
- 59% of patients report their diagnosis felt delayed
- ~50% attribute delays to lack of provider awareness — not patient behavior
- Black patients with low SES face compounded underdiagnosis risk
- Cardiac amyloidosis deaths doubled in the U.S. between 1979 and 2015 — largely undetected
When to Suspect ATTR-CM
- HFpEF in a patient of African descent over 60, especially male
- Carpal tunnel syndrome preceding heart failure (a known early-stage indicator)
- Increased LV wall thickness on echo without hypertension history
- Low-flow/low-gradient aortic stenosis
- Bilateral carpal tunnel syndrome + lumbar spinal stenosis in the same patient
- Unexplained peripheral neuropathy with cardiomyopathy
- Family history of cardiomyopathy or early cardiac death in a Black family
Diagnostic Pathway
| Test | Finding |
|---|---|
| Echocardiogram | Increased LV wall thickness, "sparkling" appearance, diastolic dysfunction |
| Tc-99m PYP/DPD Bone Scan | Grade 2-3 uptake confirms ATTR-CM (non-biopsy diagnosis) |
| Cardiac MRI | Diffuse subendocardial LGE pattern |
| TTR Genetic Testing | V142I variant (Val142Ile) confirms hereditary subtype |
| Serum/Urine PEP/IFE | Rule out AL amyloidosis before Tc-PYP scan |
Clinical Resources
Tools to Connect Patients to Care
Curated referral resources and patient-facing guides to help you recognize ATTR-CM earlier and connect affected patients — especially in underserved communities — to the right diagnosis and care pathway.
Doctor Discussion Guide
Patient-facing guide to help initiate conversations about amyloidosis symptoms and testing, published by BridgeBio Pharma, maker of Attruby®.
Access at Attruby.comGenetic Testing Guidance
Resources for cascade genetic testing of first-degree relatives of V142I carriers. Critical for health equity in ATTR-CM management.
Visit ARCIAmyloidosis Centers
National network of specialized amyloidosis treatment and diagnostic centers. Refer complex cases to expert teams.
Find CentersRegister as Campaign Partner
Healthcare providers who register help us connect patients in underserved communities to proper screening and care pathways.
Register as a Campaign Partner
Join the Provider Network
Healthcare providers who partner with the Bernita Rivers Awareness Foundation help us bridge the gap between high-risk communities and available proper diagnosis.
As a partner, you can contribute campaign educational materials, referral resources, and updates on new ATTR-CM screening programs or help us identify community health events where your expertise can make a direct impact.
For patient access and insurance support with Attruby, BridgeBio's ForgingBridges® program can be reached at 1-888-55-BRIDGE — a publicly available resource, independent of this campaign.
Partner With Us
Join the Campaign That Turns Loss Into Legacy
The Bernita Rivers Awareness Foundation invites pharmaceutical companies, healthcare organizations, and corporations to join a mission to save lives through early amyloidosis awareness: standing as a partner who genuinely showed up to answer an undeniable need in a community facing a health crisis that has gone overlooked for too long.
Why Partner With Us
Aligned Mission. Authentic Community. Unmissable Impact.
This campaign was built around the same community BridgeBio's "Don't Pass On Your Heart Health" campaign targets — but tells a story that no pharmaceutical company can tell itself.
| Alignment Factor | BridgeBio's Public Campaign | This Campaign's Approach |
|---|---|---|
| Target community | Black Americans with V142I variant | Black community, especially men over 60 in faith communities |
| Core message | Recognize symptoms earlier; a treatment exists | Know the disease exists; a treatment can only be applied to a known disease |
| Spokesperson approach | Celebrity + personal diagnosis story (Morgan Freeman, Howard "H" White) | Personal grief + best friend story — the voice of loss, fighting to make sure others survive |
| Geographic focus | National, with emphasis on underserved communities | National, anchored in faith communities and Black family networks |
| Gap filled | Driving patients to diagnosis and treatment | Creating the awareness that makes patients seek diagnosis in the first place |
Partnership Opportunities
Three Ways to Partner
Each tier is structured to align with the scale of your organization's capacity and commitment to this community.
Community Partner
Ideal for organizations beginning their amyloidosis community engagement. Provide educational materials and visibility.
- ✓ Logo recognition on campaign website and materials
- ✓ Provide co-branded educational materials for distribution
- ✓ Quarterly campaign impact report
- ✓ Social media cross-promotion (3 posts annually)
Awareness Partner
Deep integration between your outreach programs and our community network. Build authentic trust in Black communities together.
- ✓ All Tier 1 benefits
- ✓ Co-sponsorship of 2–4 community awareness events annually
- ✓ Featured in campaign storytelling content
- ✓ Patient referral pathway integration
- ✓ Monthly campaign updates and community intelligence
Campaign Sponsor
Transform your investment in the Black community into sustained, measurable awareness impact across the United States.
- ✓ All Tier 1 & 2 benefits
- ✓ Fund free V142I genetic screening events in target communities
- ✓ Named sponsorship of campaign's national awareness events
- ✓ Executive speaking opportunities at campaign events
- ✓ Annual impact report with community reach metrics
- ✓ Priority introductions to faith community and media partners
A Direct Message to BridgeBio Pharma
The Bernita Rivers Awareness Foundation actively seeks a partnership with BridgeBio Pharma, maker of Attruby® (acoramidis). Your "Don't Pass On Your Heart Health" campaign helps people recognize symptoms once they know the disease exists. Ours creates that awareness in the first place, because a treatment can only be applied to a known disease. Together, we close the loop.
If you are a BridgeBio representative, we would welcome you reaching out to us using the form below.
Get In Touch
Start a Partnership Conversation
Whether you represent a pharmaceutical company, healthcare system, foundation, community organization, or corporate sponsor, we would welcome a conversation about how we can work together to ensure that no more families lose a loved one because they didn't know amyloidosis existed.
The Bernita Rivers Awareness Foundation is founded by Dr. Elveria Glover and Velma McKenzie-Orr. We bring community trust, personal story, and faith-network reach that no paid campaign can replicate.