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SHARING KNOWLEDGE ABOUT HEREDITARY ATTR-CM
Voices for the heart, from the heart.

Do you or does someone you know live with heart failure? Hereditary ATTR-CM (transthyretin amyloid cardiomyopathy) affects Black, African American, and Afro-Caribbean communities more than any other. Voices for the Heart is here for your stories about heart health. Learn how you can host a Voices for the Heart event.

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HEREDITARY ATTR-CM AFFECTS BLACK, AFRICAN AMERICAN AND AFRO-CARIBBEAN COMMUNITIES MORE THAN ANY OTHER

Randy, hereditary ATTR-CM patient

Randy, hereditary ATTR-CM patient

Hereditary ATTR-CM is a condition associated with heart failure. It is caused by a change (or a “mutation”) in one of your genes, which can be passed down from a relative. In the US, the most common mutation that can cause ATTR-CM is V122i, and it affects Black, African American and Afro-Caribbean people almost exclusively. That’s why Voices for the Heart is dedicated to elevating the experiences and stories of people in your community who are living with ATTR-CM or have a loved one who is experiencing the condition.

If you are of Black, African American or Afro-Caribbean descent, are over 50 years old, have a family history of heart failure, and you are experiencing unresolved symptoms, you may be at risk for hereditary ATTR-CM.

HEAR RANDY’S STORY

OUR GOAL

Woman holding papers and speaking in front of an audience Woman holding papers and speaking in front of an audience

Partnering with the community’s leaders to help raise awareness.

What happens at a local Voices for the Heart event? Local doctors, leaders, clergy people, and others will come together to host an event that aims to raise awareness about hereditary ATTR-CM among the community it affects. At an event, you may hear stories from those living with ATTR-CM, from local doctors who treat it, from local pastors who have counseled families dealing with health issues, or other people you’ll recognize from your neighborhood.

Former NBA player and coach, Don Chaney, on his ATTR-CM experience

“I had joint pain and carpal tunnel syndrome, but never imagined they were related to my heart…”

“My cardiologist ran some tests, but the cause of my heart failure was still unclear. For years, I had experienced carpal tunnel syndrome, knee pain, and swelling in my lower legs and feet, but I simply chalked these up to my years on the court. I didn’t think to mention them as part of my medical history when I started having heart problems, but I wish I had. It turns out, some were early signs and symptoms of this rare heart condition called ATTR-CM.”

UNDERSTAND THE SIGNS AND SYMPTOMS

Do you know that some seemingly unrelated and unresolved signs and symptoms could be caused by ATTR-CM? Your body may be sending you a message.

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FATIGUE

(excessive tiredness)

"I'm tired all of the time"

TENDON RUPTURE

(eg, biceps, Achilles tendon)

“There is a painful lump in my upper arm.”

STOMACH ISSUES

(eg, diarrhea, constipation, nausea, or feeling full quickly)

“It seems like my stomach is more sensitive lately.”

SHOULDER, HIP, AND/OR KNEE PAIN

“It’s been years since I had my hip replaced.”

SWELLING IN LOWER LEGS

(known as peripheral edema)

“My lower legs and feet look swollen and puffy all the time these days.”
“I have a past medical history of glaucoma.”

EYE DISORDERS

(eg, glaucoma)

“Sometimes I feel like I can't catch my breath.”

SHORTNESS OF BREATH

“My doctor says I have an abnormal heartbeat.”

IRREGULAR HEARTBEAT

(known as cardiac arrhythmia)

“I’ve had carpal tunnel syndrome in both wrists for years now.”

BILATERAL CARPAL TUNNEL SYNDROME

(numbness, tingling, or pain in your fingers)

“My doctor told me my back pain is caused by something called lumbar spinal stenosis.”

PAIN OR NUMBNESS IN LOWER BACK OR LEGS DUE TO NARROWING OF LOWER SPINE

(known as lumbar spinal stenosis)

“It feels like my feet are always falling asleep.”

Decreased sensation or strange tingling or pain in toes or feet

(known as peripheral neuropathy)

CLINICAL TESTS TO LOOK FOR SIGNS THAT MAY SUGGEST ATTR-CM

INITIAL TESTS

Your doctor may first order the following tests to assess how your heart is working and look for signs of ATTR-CM. These tests may include:

Electrocardiogram (ECG)
  • Reads electrical signals from your heart
  • Can reveal conditions like irregular heartbeat (ie, atrial fibrillation), among other findings, that may be related to ATTR-CM
Echocardiogram (ECHO)
  • Uses sound waves to create images of your heart
  • Findings help determine the speed and direction of blood flow in the heart
  • Findings associated with ATTR-CM include, but are not limited to, heart failure with preserved ejection fraction (HFpEF), which relates to the amount of blood that passes through the heart with each beat
Cardiac magnetic resonance imaging (Cardiac MRI)
  • Uses radio waves, magnets, and a computer to create images of your heart to look for abnormalities

While none of these tests are typically used to confirm an ATTR-CM diagnosis, they can help your doctor learn more about your heart and determine the need for additional diagnostic testing.

DOWNLOADABLE RESOURCES

  • Learn more about hereditary ATTR-CM and how this disease has affected former NBA player and coach, Don Chaney. Download Don's brochure

EVENTS

Upcoming (6)

  • Detroit skyline
    Detroit

    9/30

    Hybrid event

    Free

    • Sep

    30

    Today

    Tell the Story of Your Heart - Detroit

    Voices for the Heart is dedicated to raising awareness about ATTR-CM among Black, African American and Afro-Caribbean communities. Voices for the Heart events elevate the stories and experiences of Black Americans living with heart disease. In this live event, community leaders will share their stories and lead a conversation and answer questions about heart health and health advocacy.

    REGISTER WITH ZOOM
    ABOUT THIS EVENT

    Voices for the Heart is a program dedicated to raising awareness of a rare heart condition called hereditary ATTR-CM (hATTR-CM). hATTR-CM is a serious and often underdiagnosed cause of heart failure in Black, African American, and Afro-Caribbean communities. The program explains the warning signs of ATTR-CM and can help you or your loved ones who might have this heart condition talk about it with their doctor.

    LEARN MORE

    • Date & Time

      Saturday, Sep 30

      9:00 AM ET

    • Location

      Detroit Association of Black Organizations, Inc 12048 Grand River Ave, Detroit, MI 48204

      Virtual Event Via Zoom

      Zoom

    • Price

      Free

    • Radio ad

  • Mobile skyline
    Mobile

    10/12

    Hybrid event

    Free

    • Oct

    12

    In 12 days

    Tell the Story of Your Heart - Mobile

    Voices for the Heart is dedicated to raising awareness about ATTR-CM among Black, African American and Afro-Caribbean communities. Voices for the Heart events elevate the stories and experiences of Black Americans living with heart disease. In this live event, community leaders will share their stories and lead a conversation and answer questions about heart health and health advocacy.

    REGISTER WITH ZOOM
    ABOUT THIS EVENT

    Voices for the Heart is a program dedicated to raising awareness of a rare heart condition called hereditary ATTR-CM (hATTR-CM). hATTR-CM is a serious and often underdiagnosed cause of heart failure in Black, African American, and Afro-Caribbean communities. The program explains the warning signs of ATTR-CM and can help you or your loved ones who might have this heart condition talk about it with their doctor.

    LEARN MORE

    • Date & Time

      Thursday, Oct 12

      11:00 AM CT

    • Location

      Spring Hill College, Byrne Memorial Hall, 4000 Dauphin St, Mobile, AL 36608

      Virtual Event Via Zoom

      Zoom

    • Price

      Free

    • Radio ad

  • Dallas skyline
    Dallas

    10/12

    Hybrid event

    Free

    • Oct

    12

    In 12 days

    Tell the Story of Your Heart - Dallas

    Voices for the Heart is dedicated to raising awareness about ATTR-CM among Black, African American and Afro-Caribbean communities. Voices for the Heart events elevate the stories and experiences of Black Americans living with heart disease. In this live event, community leaders will share their stories and lead a conversation and answer questions about heart health and health advocacy.

    REGISTER WITH ZOOM
    ABOUT THIS EVENT

    Voices for the Heart is a program dedicated to raising awareness of a rare heart condition called hereditary ATTR-CM (hATTR-CM). hATTR-CM is a serious and often underdiagnosed cause of heart failure in Black, African American, and Afro-Caribbean communities. The program explains the warning signs of ATTR-CM and can help you or your loved ones who might have this heart condition talk about it with their doctor.

    LEARN MORE

    • Date & Time

      Thursday, Oct 12

      7:00 PM CT

    • Location

      Pearls of Ivy Foundation 6808 Pastor Bailey Drive Dallas, Texas 75237

      Virtual Event Via Zoom

      Zoom

    • Price

      Free

    • Radio ad

  • Miami skyline
    Miami

    10/25

    Hybrid event

    Free

    • Oct

    25

    In 25 days

    Tell the Story of Your Heart - Miami

    Voices for the Heart is dedicated to raising awareness about ATTR-CM among Black, African American and Afro-Caribbean communities. Voices for the Heart events elevate the stories and experiences of Black Americans living with heart disease. In this live event, community leaders will share their stories and lead a conversation and answer questions about heart health and health advocacy.

    REGISTER WITH ZOOM
    ABOUT THIS EVENT

    Voices for the Heart is a program dedicated to raising awareness of a rare heart condition called hereditary ATTR-CM (hATTR-CM). hATTR-CM is a serious and often underdiagnosed cause of heart failure in Black, African American, and Afro-Caribbean communities. The program explains the warning signs of ATTR-CM and can help you or your loved ones who might have this heart condition talk about it with their doctor.

    LEARN MORE

    • Date & Time

      Wednesday, Oct 25

      7:00 PM ET

    • Location

      Antioch Missionary Baptist Church of Miami Gardens 21311 NW 34th Ave Miami Gardens, FL 33056

      Virtual Event Via Zoom

      Zoom

    • Price

      Free

    • Radio ad

  • Baltimore skyline
    Baltimore

    10/26

    Hybrid event

    Free

    • Oct

    26

    In 26 days

    Tell the Story of Your Heart - Baltimore

    Voices for the Heart is dedicated to raising awareness about ATTR-CM among Black, African American and Afro-Caribbean communities. Voices for the Heart events elevate the stories and experiences of Black Americans living with heart disease. In this live event, community leaders will share their stories and lead a conversation and answer questions about heart health and health advocacy.

    REGISTER WITH ZOOM
    ABOUT THIS EVENT

    Voices for the Heart is a program dedicated to raising awareness of a rare heart condition called hereditary ATTR-CM (hATTR-CM). hATTR-CM is a serious and often underdiagnosed cause of heart failure in Black, African American, and Afro-Caribbean communities. The program explains the warning signs of ATTR-CM and can help you or your loved ones who might have this heart condition talk about it with their doctor.

    LEARN MORE

    • Date & Time

      Thursday, Oct 26

      6:30 PM ET

    • Location

      Kappa Youth and Community Center 1207 Eutaw Place Baltimore, Maryland 21217

      Virtual Event Via Zoom

      Zoom

    • Price

      Free

    • Radio ad

  • Jackson skyline
    Jackson

    11/5

    Virtual Event Via Zoom

    Free

    • Nov

    5

    In 36 days

    Tell the Story of Your Heart - Jackson

    Voices for the Heart is dedicated to raising awareness about ATTR-CM among Black, African American and Afro-Caribbean communities. Voices for the Heart events elevate the stories and experiences of Black Americans living with heart disease. In this live event, community leaders will share their stories and lead a conversation and answer questions about heart health and health advocacy.

    REGISTER WITH ZOOM
    ABOUT THIS EVENT

    Voices for the Heart is a program dedicated to raising awareness of a rare heart condition called hereditary ATTR-CM (hATTR-CM). hATTR-CM is a serious and often underdiagnosed cause of heart failure in Black, African American, and Afro-Caribbean communities. The program explains the warning signs of ATTR-CM and can help you or your loved ones who might have this heart condition talk about it with their doctor.

    LEARN MORE

    • Date & Time

      Sunday, Nov 5

      6:00 PM ET

    • Location

      Virtual Event Via Zoom

      Zoom

    • Price

      Free

    • Radio ad

You will be directed to our Zoom registration page

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