Mother and daughter Autumn Fuernisen, 15, and Londen Tabor, 38, talked together as part of our series produced in partnership with StoryCorps to help change the narrative around neurodegenerative disease. 

juvenile Huntington's disease

In this conversation, Autumn Fuernisen, 15, and her mother Londen Tabor, 38, talk about how Huntington’s disease (HD) has impacted their whole family and driven them to celebrate every day and, in Londen’s words, “along the way we’ll talk about Huntington’s disease.”

Autumn’s father was diagnosed with Huntington’s in his 20s and Autumn tested positive for juvenile Huntington’s disease (JHD) when she was just 11.

As Londen searched for stories or resources on HD she found “it was just the sad stuff.” So she and Autumn started recording their own moments of joy and real life on TikTok, where they have 75,600 followers.

Listen to the conversation

From the recording:

LONDEN: What do you want people to understand about Huntington’s disease and juvenile Huntington’s disease?

AUTUMN: It’s like the worst disease ever.

LONDEN: Yeah, there’s that. [For me], it was just hard to see all the videos out there [about HD] and all of it was just the sad stuff. And I was like, there is still a life left to be lived for you. And I thought that was the most important thing.

You know, we remember what it was like in the end for your dad and I don’t want to think about that. I just want to focus on now. And today. And having the best time we can and enjoying all the time we can. And doing whatever we can today, that we can. We’ll take it one day at a time. And along the way, we’ll talk about Huntington’s disease.

And we’ve made a difference, haven’t we?

AUTUMN: Uh-huh.

LONDEN: TikTok’s been amazing because it’s been a way for me to cope and a way for me to find support and to connect with people from all over the world. And inspiring them helps me want to keep going. … We show them: Live life to the fullest. Just because you’re diagnosed with a terminal illness doesn’t mean it’s the end of your life, it just means you need to make the best of your life.

More about Sophia

Sophia Rodriguez

Sophia Rodriguez is a board certified genetic counselor specializing in Alzheimer’s disease research in the Latino population with a passion for healthcare advocacy for the underserved. Her work experience includes research and clinical trials for gene therapy for inherited retinal disease, as well as consulting and creating educational content for early-onset Alzheimer’s disease aimed to reach Hispanic communities. She is also committed to raising Alzheimer’s awareness and support for policy changes.

Sophia has a master’s degree from the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. She grew up in Cliffside Park, New Jersey and loves anything related to cats, coffee, and food, and enjoys cooking, working out, and watching documentaries on just about anything.