Willis’ family shared an update in February announcing the actor’s aphasia condition had developed into frontotemporal dementia (FTD).
Heming Willis has been trying to raise awareness of dementia on social media and frequently hosts Instagram live chats with health experts and fellow carers.
The model shared a picture of a white rose, with the words: “Remember to never lose hope”, in a new Instagram post.
In the post’s caption, she told her followers that she was disappointed to learn that a clinical trial for FTD – Willis’s condition – had been terminated.
“Yesterday I read that Wave Life Sciences ended their clinical trial that could potentially treat frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS).”
“Where I’m not sure it could have helped us over here, it doesn’t really matter, it still feels like a gut punch.”
On 23 May, Wave Life Sciences announced it had ended the trial early, the research should be considered a “major step forward” in the path to developing “future treatments”. At present, there is no cure for FTD.
“While the FOCUS-C9 trial did not find evidence of a clinical benefit for participants with either FTD or ALS, it did help to chart a promising path toward future treatments,” the Association for Frontotemporal Degeneration said in a statement on its website. “It confirmed that even though FTD and ALS are less common than some other neurodegenerative diseases, clinical trials of new treatments are feasible, and that people living with these conditions are keen to participate in such research.”
Heming Willis said she was looking at the “silver linings” despite the news, and praised researchers for continuing to find out more about the degenerative disease.
“They are trying,” she said, before thanking Wave Life Sciences and Alzheimer’s Drug Discovery Foundation for “keeping the momentum going” in developing new findings.
She concluded: “Our family will continue to keep the faith and never lose hope.”
The post comes after she opened up about the “sad truth” about Bruce’s condition.
"The sad truth is that there is no cure for Alzheimer’s or dementia. No amount of vitamin D or B is going to cure a degenerative disease,” she said in a recent video.
Last week, Heming Willis shared a touching story about her nine-year-old daughter, Evelyn, who she shares with the Pulp Fiction actor, who had been Googling facts about dementia to see if she could better understand her father’s condition.