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This week I’m joined by Wanda Smith, founder of CureGRN, a global nonprofit raising awareness, building community and driving research into FTD caused by a progranulin (GRN) gene mutation.
Wanda’s connection to dementia began in 1982. Her mum was diagnosed with young onset Alzheimer’s, and for almost six years Wanda cared for her at home while raising a toddler and a baby. It was only after her mum passed away that an autopsy revealed it wasn’t Alzheimer’s after all.
We talk about the promise Wanda made to her mum, how that led her to found CureGRN, and what GRN FTD actually is. Wanda also shares her advice for anyone considering a clinical trial or genetic testing, and explains why taking action can be such a powerful antidote to fear.
If you or your family are affected by GRN FTD, CureGRN’s community is open to families worldwide, including here in the UK.
Find out more, sign up to the Progranulin Pulse newsletter, or donate: curegrn.org
If you’re struggling with anything discussed in this episode, support is available from Alzheimer’s Research UK and Alzheimer’s Society
Get in touch: Instagram @ftdnavigatingthecrap | ftdnavigatingthecrap@gmail.com
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