Emma & Bruce Willis Fund launches for FTD research & caregiver support [developing]
Key Questions
What is the Emma & Bruce Willis Fund?
The Emma & Bruce Willis Fund launched on March 12 in partnership with AFTD, Entertainment Industry Foundation, and ADDF to support FTD research and caregiver resources. Emma Heming Willis promoted it on Bruce Willis's 71st birthday (March 23) and their 17th anniversary. It aims to advance treatments and support for frontotemporal dementia.
What is the status of AviadoBio's AVB-101 trial?
AviadoBio's AVB-101 is in Phase 1/2 ASPIRE-FTD trial, with the 4th cohort of 12 patients dosed, showing CSF progranulin boost. The trial focuses on FTD treatment. No further safety details were mentioned.
What updates are there on Denali's DNL593 trial?
Denali's DNL593 Phase 1/2 trial for FTD progranulin has completed enrollment of 85 patients (40 FTD-GRN), with data expected end of 2026 and no safety flags reported. Takeda returned the asset amid restructuring. The partnership with Takeda has ended.
Who is Ian Witterick and what is his story?
Ian Witterick is an FTD caregiver sharing his experiences, including explaining behavioral variant FTD diagnosis to children and family impacts. His story is featured in SDD Carers Conversations Part 1 video. It highlights personal challenges in FTD caregiving.
How does FTD differ from Lewy Body Dementia (LBD)?
FTD affects frontal lobes, while LBD involves different symptoms like bladder/bowel issues, RBD, covered in LBDA webinar. FTD is compared to LBD in terms of frontal impacts versus other features. Rare dementias like LATE, PCA, CJD, FTD-MND, PSP are also discussed.
What are survival rates for early onset dementia (EOD)?
EOD diagnosis significantly reduces survival, with variations across diagnostic groups. End-of-disease survival data is noted. Studies show poorer outcomes compared to late-onset forms.
What trials are available at San Antonio Glenn Biggs?
San Antonio Glenn Biggs Institute offers trials for dementias including anosognosia and BPSD. It focuses on rare dementias and related conditions. Specific details on ongoing studies are mentioned in the context of FTD and others.
What is the CSF biomarker for Lewy Body Diagnosis?
Higher CSF DDC levels support Lewy Body Dementia diagnosis and associate with parkinsonian symptoms. It aids in distinguishing LBD features. Clinical features like those in LBD patients are linked to these levels.
Emma Heming Willis promoted fund on Bruce's 71st bday (Mar 23) and 17th anniversary; launched Mar 12 with AFTD/Entertainment Industry Foundation/ADDF. AviadoBio AVB-101 Ph1/2 ASPIRE-FTD 4th cohort (12 pts, CSF progranulin boost); Denali DNL593 Ph1/2 FTD progranulin enrollment complete 85 pts (40 FTD-GRN), data EOY2026, no safety flags; Takeda returned asset. Ian Witterick FTD caregiver story explaining bvFTD dx to kids/family impacts; LBDA webinar LBD bladder/bowel/German/RBD; FTD frontal vs LBD; rare dementias LATE/PCA/CJD/FTD-MND/PSP; EOD survival; San Antonio Glenn Biggs trials; anosognosia/BPSD.