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The Alzheimer's Association also supports other types of dementia. At the age of 47, I was diagnosed with a rare form of (Atypical) Frontotemporal Disorder/Dementia (FTD). This condition is caused by damage to the neurons in the frontal and temporal lobes of my brain, leading to shrinkage or atrophy in these areas. My symptoms include trouble with executive functions such as planning, problem-solving, and staying organized; emotional regulation issues; poor working memory; difficulty with communication; visual and auditory hallucinations; and balance problems. FTD is rare and tends to occur at a younger age than other forms of dementia, with roughly 60% of cases affecting people aged 45-64.
Currently, I am a participant in major research studies. I am involved in the LEADS (Longitudinal Early-Onset Alzheimer's Disease Study) at Medstar/Georgetown University Hospital, as well as the National Institutes of Health (NIH) Neurodegenerative Disorders Clinic's study on complex neurodegenerative disorders related to ALS and FTD. Additionally, I am part of the NIH ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) study.
As of now, there is no cure or treatment for FTD. In fact, new Alzheimer's drugs may actually worsen my symptoms. Despite this, I have an amazing team of medical professionals helping to manage my care. I participate in research studies in the hope of being accepted into new clinical trials.
This diagnosis has been difficult for me, but even more so for my family.
Please consider joining our walking team or making a donation.
Thank you for your support!
-Natasha
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