AFTD CEO Susan L-J Dickinson, MSGC, joined the hosts of the Rodger Quello podcast for its 100^th episode to discuss FTD and the organization’s awareness efforts.

“FTD is the most common dementia for people under the age 60. Most people are in their 40s and 50s when they start to develop strange symptoms,” Dickinson said to hosts Bobbi and Mike Carducci, explaining how FTD differs from other dementias. “Doctors are not used to thinking ‘I should worry about this as a form of dementia.’ We’re used to thinking that as a disease of the elderly.”

Dickinson also discussed the push to raise FTD awareness around the world with World FTD Awareness Week, which has been globally observed since 2015. She commented on AFTD’s partnership with international coalition World FTD United to produce this year’s Conversazione globale su FTD.

“If you think about how rare this disease is, we need to join forces to spread awareness. It’s fundamental to so much of what we want to accomplish for our community,” said Dickinson. “The lack of awareness … that there are many different kinds of dementia that show up in different ways with different symptoms [emerging] at different ages is something that most people aren’t aware of. That lack of awareness really adds to the pain and challenge that families face when one of these diseases come into their lives.”

Dickinson also provided an update on the FTD clinical trials that are currently underway and the challenges of confirming an FTD diagnosis, saying “until we actually have a diagnostic test and clinicians educated so they know when to use it, we are not going to have an accurate count of how many people in the U.S. have FTD.”

Listen to the full “Rodger That” podcast episode featuring AFTD CEO Susan L-J Dickinson Qui.