Though I made many requests for one, my parents refused to get me a baby sister like I wanted. What I wouldn’t realize until much later was that I always had one. My aunt Libbi and I grew up together. Though she was born sixty (!!) years ago with Down Syndrome, she was always the sister I never had. We vacationed together, played together and of course, sometimes fought...as sisters do. While we never looked at Libbi as having a disability, she certainly had some limitations but always seemed to have a dream life in spite of them. Worldwide travel, famous friends, the daily glass of wine at exactly 5:01pm as soon as her “stories” were over-the list goes on and on. In the past few years, however, those limitations have grown more severe with her diagnosis of Alzheimer’s disease.
The good news is that people with Down Syndrome are living longer lives, the bad news is that they are more prone to develop Alzheimer's than the rest of the population. How can we help reverse that trend and ensure they have not only more years, but that those years are as full as the rest of their beautiful lives?
We have decided to honor Libbi and her fabulous life by funding research that will help allow a better future with those behind her. It’s too late for Libbi now as she is currently in the late stages of Alzheimer's, but we are proud to announce the formation of the Libbi Thomas foundation in her honor. The funds from the Foundation will be given to the research program at Mass General where doctors are working to identify the biomarkers that make people with Down Syndrome more likely to develop Alzheimer’s as they age.
I look at this foundation as part of the legacy of the amazing women in my family. My grandmother ignored the advice of the doctors to send her newborn away to an institution, as was done at the time, and instead took her home and raised her exactly the same way she raised her other three children. My mother took on the responsibility of caring for Libbi once their parents were gone and spent hours researching programs that were available for Libbi to keep her mind sharp and her body healthy. And now it’s my turn. I chose to carry on my family’s legacy of advocacy for those with Down Syndrome by ensuring that the younger generation won’t have to face the devastating effects of an Alzheimer’s diagnosis after they have already overcome so much.
Will you help?
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71106