Our Stories.
Rooted In Our Families
Our Voice.
Held and Honored Here
I am thankful to the Amyloidosis Research Consortium for creating opportunities for patients, caregivers, gene carriers, and healthcare professionals to come together and share their experiences, insights, and expertise.
Too often, conversations about hereditary amyloidosis focus only on the physical aspects of the disease. Programs like this help shine a light on the emotional realities as well, including family communication, caregiving, uncertainty, grief, and inherited risk.
By bringing together lived experience and professional guidance, these conversations help individuals and families feel more informed, supported, and connected throughout their journey.
Hear Me Now….
In the 1800s, enslaved Black Americans in Edgefield, South Carolina created stoneware pottery that endures to this day. Most were never credited as artists. Only a few were able to mark their names or words into the clay.
Still, their hands spoke.
Their work survived.
Voice and authorship were not freely given to our ancestors, yet they found ways to be seen, remembered, and heard.
This space honors that legacy.
Hear Me Now in modern day can be where our community claims its voice, highlighting lived experiences with hereditary amyloidosis and telling our stories on our own terms.
Some stories are shared directly from our NextGen community. Others are lifted up and amplified here because they deserve to be heard.
We are still finding a way.
Bring Your Voice to the Table!
Every family has a journey. Every voice carries wisdom. If you feel moved to speak on what hATTR has meant in your life or your loved ones’ lives, we want to hear it.