If you’ve never heard of Frontotemporal Lobar Degeneration, consider yourself lucky. If you are familiar with FTLD, you know that it strikes people in their prime – the average age of onset is 58, but ranges from 30 – 82. Over months or years, the neurodegenerative disease progressively causes people to lose control of their speech and language, as well as personality and social functioning. The disease is fatal, and currently has no cure.
Last weekend, Penn’s FTLD Center hosted its annual meeting for the caregivers of people with FTLD, as well as some of the related diseases – Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), Progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD). The caregivers listened to the latest research and understanding of the diseases, and learned from caregiving experts about available resources and important caregiving skills.
Over the next few days, we’ll be posting short interviews from experts and looking into some of the topics covered at the conference – including the overlapping pathology behind these diseases, promising drug candidates from Penn’s drug discovery program, and the struggles caregivers face on a daily basis.
To start, we’ve compiled a transcript of live-tweets from the FTLD Caregiver Conference.
If you attended the conference, what information did you find most fascinating? For me, it was learning that they’re hoping to have an effective treatment for FTLD in 10 years. With an amazing team and the full-spectrum of research underway here at Penn, I don’t doubt it.