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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