This week on The Genetics Podcast, Patrick is joined by Wanda Smith, founder of CureGRN. They discuss Wanda’s journey from caring for her mother to driving FTD research, the discovery of progranulin and development of new therapies, the diagnostic odyssey and need for earlier genetic testing, and how the CureGRN community is expanding support and awareness worldwide.
Show Notes:
0:00 Intro to The Genetics Podcast
00:59 Welcome to Wanda
02:18 Wanda’s journey into frontotemporal dementia (FTD) research from being a caregiver to establishing a brain bank
06:31 Shifting focus after the discovery of progranulin (GRN) and accelerating FTD research through collaboration
08:23 How GRN haploinsufficiency drives FTD and what it means for therapy
11:57 Implication of progranulin in neurodegenerative diseases and therapies now in clinical trials
13:33 Why earlier genetic testing and diagnosis are critical for families with GRN mutations
15:31 Barriers behind the diagnostic odyssey and limited access to genetic testing
17:03 Moving from symptom-based diagnosis to early diagnosis with biomarkers
19:50 Expanding CureGRN’s reach through global collaboration
21:14 Raising awareness to drive FTD research
22:44 Overcoming stigma and shame to encourage trial participation in FTD
24:41 Navigating family conversations about FTD with compassion and meeting people where they are
26:39 Providing multiple pathways for families to access support, education, and community
28:35 Insights into the future of FTD and addressing the gaps preventing progress in care and diagnosis
30:58 The importance of genetic testing and community resources in FTD
33:23 The role of younger gene carriers in shaping early detection, prevention, and long-term care in FTD
37:00 Closing remarks
Find out more
CureGRN (https://www.curegrn.org/)
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