A mission rooted in family.

“When I think about my mother, I feel loved. I feel strength. And now, more than ever, I feel a responsibility to continue the work that made her so proud.”

My journey with hereditary ATTR (hATTR) amyloidosis began long before I understood what the disease was or how deeply it had affected my family.

My mother, Lucille T. Bonvillian, lost six siblings to heart-related complications. For years, we watched loved ones become ill, suffer, and pass away without fully understanding why. We grieved without answers, never realizing that the heartbreak our family continued to experience could be connected to something passed down through generations.

I often think about how different things might have been if we had known sooner. If someone had educated our family about hereditary amyloidosis. If we had understood the importance of family medical history, genetic testing, and early detection.

Those unanswered questions became the foundation of my purpose.

As a breast cancer survivor and someone who has personally tested positive for a hereditary ATTR gene variant, I understand the importance of knowing your family's health history. I also understand the fear, uncertainty, and responsibility that can come with that knowledge.

I founded Heart & Heritage Health Foundation to turn our family's experience into awareness, education, advocacy, and hope for others.

On October 8, 2026, my beautiful mother lost her battle with hATTR amyloidosis.

Losing her has been one of the most difficult experiences of my life. She was more than my mother. She was my motivation, my encouragement, and one of my greatest supporters.

Just weeks before she passed away, I shared the foundation's new logo and updated website with her. She loved what she saw. She told me how proud she was of me and encouraged me to keep speaking about the disease and helping others.

Those words are something I will carry with me for the rest of my life.

Today, Heart & Heritage Health Foundation is more than an organization I created. It is a continuation of my mother's legacy, a tribute to the family members we have lost, and a commitment to the generations who come after us.

My mission is especially focused on reaching underserved communities, including African American families who may be unaware of the hereditary conditions affecting their loved ones. I want families to recognize the warning signs, ask questions, understand their risks, and have access to the resources that can help them make informed decisions about their health.

I cannot change what happened to my mother or the loved ones we lost before her. But I can use our story to help another family recognize what ours did not know soon enough.

I want families to have answers before they experience loss. I want awareness to replace silence, knowledge to replace uncertainty, and hope to reach families who feel they are facing this journey alone.

My mother may no longer be here physically, but her love, her strength, and her belief in this mission will forever be a part of Heart & Heritage Health Foundation.

This is my family's story. This is my mother's legacy. And this is my promise to keep going.

With gratitude,

Kimberly Tucker Simon

Founder