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Wanda’s Story

FTD patient advocate and caregiver

As a young mom in her 20’s, the last thing Wanda expected was to become the primary caregiver for her mother. It came as a surprise when her mom started to forget things and show symptoms of neurological degeneration when she was only in her 50’s. It first became obvious on Thanksgiving Day, a holiday usually full of turkey and fun activities for Wanda’s family, when her mother became upset that she had no help to prepare dinner, which they had just finished and cleaned up. She was beside herself – she had forgotten the whole morning.

As the symptoms progressed, Wanda moved her mother across state lines to care for her. Wanda recalls the experience of raising her children alongside her mother’s declining condition. While the infants were growing up and learning to walk and talk, her mother had aphasia and was losing her speech.

“Life was growing and being lost all in the same window.”

Wanda brought her mother to a neurologist and received the same response that most people seeking a diagnosis for these symptoms received at the time: ‘She’s in her early 60s, so she must have Alzheimer’s disease. Just go home and have a nice life.’

It was the 1980’s and researchers had yet to fully understand the genetics underlying these neurological conditions, which were frequently misdiagnosed. Years after her mother passed, Wanda was able to genetically test some of her mother’s DNA through a blood sample that she had banked and finally get real answers. It turns out her mother had a mutation in a gene called GRN, which is responsible for making an important cellular protein called progranulin, linked to frontotemporal dementia (FTD).

FTD causes progressive degeneration of the frontal and temporal lobes of the brain, which control decision-making, behavior, emotion and language. Although symptoms vary, FTD progresses more rapidly than Alzheimer’s disease, and death typically occurs three to ten years after the onset of symptoms. FTD-GRN, the kind Wanda’s mother had, is a form of FTD in which only half the normal amount of progranulin is produced, leading to inflammation and degeneration of brain cells.

With this new information, Wanda became an advocate for FTD to spread the message that one size does not fit all when it comes to diagnosing this type of illness. Wanda works tirelessly to spread awareness about genetic testing and the benefit of knowing what you’re up against and how best to treat it.

While there are currently no approved therapies for FTD, Wanda hopes her advocacy work can help lead to more awareness and clarity for family members in how and when FTD impacts people; something she never had when caring for her mother.

“In the last year or so we have seen the first sign of hope for new drugs that may be able to change these genetic diseases…. I try to encourage family members to run, don’t walk, to find out their genetic makeup and get as much information as they can about what’s going on. If there is a hereditary basis, that’s significant for future generations to know, because companies like Prevail are working on products that are targeted to specific genetic factors, and if you have one of those factors you certainly want to know who’s treating it.”

I had three in diapers – my toddler, my infant, and my mother. You would be surprised what you can do when you know the options are limited. That’s true for most caregivers – in the moment, they’re just surviving.”
FTD patient advocate and caregiver

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