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Read about our family’s struggle with FTD in the New York Times Magazine article “The Vanishing Family” by Robert Kolker or listen: The Daily podcast on Spotify. As children - with nine siblings in total - we were a typical, large Irish-American family living in the suburbs of the Midwest. We attended Catholic schools, played sports, took dance lessons, and cheered for our favorite football teams on the weekends. After college, we sought diverse career paths, settled down throughout the U.S., and had kids of our own. Our growing family created many wonderful memories together during holidays and reunions. Life was good. In her late 30s, our second oldest sister started behaving strangely. Something was terribly wrong with Christy. She stopped caring for her children, refused to shower, and forgot how to cook her favorite meals. She lacked emotion. Doctors initially diagnosed Christy with depression, then schizophrenia. We never quite believed these diagnoses fit her symptoms. Christy lost her career, husband and children. She required full-time care. Years later, after all of us had our own children, our sister Mary developed similar symptoms. She distanced herself from family and friends. She lost her job as a project manager at the age of 45. Mary’s husband divorced her and took custody of her young son. She stopped bathing and required full-time care. Throughout this period of extreme loss, Mary never expressed sadness or fear. With the onset of Mary’s symptoms, we all began to panic. This couldn’t be some weird coincidence. What if it’s genetic? What if more of us have it? What if we’ve passed it to our children? A family visit to the Mayo Clinic confirmed our worst fears. Christy and Mary have a mutation called “v337m” on the microtubule-associated protein tau (MAPT) gene that causes frontotemporal dementia (FTD) - the most common type of dementia affecting people under the age of 60. An estimated 60,000 people in the U.S. have FTD, but the disease has no effective treatments and no known cure, the researchers told us. Apparently, our mother had carried the mutation, but she had died of breast cancer before dementia showed its ugly face. We learned on that tearful day that each of us has a 50/50 chance of getting dementia in our mid-forties and passing the mutation - and this horrible fate - onto our own children. As of today, five of us siblings have been diagnosed with FTD. Words cannot sufficiently capture the deep and profound sadness that accompanies our family’s loss. Our now three-generation family has witnessed our beloved sisters and brothers, moms and dads, grandparents, spouses, aunts and uncles essentially vanish before our very eyes into relentless and permanent cognitive decline. And perhaps the most heartbreaking part of this - we know through genetic testing that the mutation has made its way to the next generation. When we learned this, we vowed as a family to fight for the future. We resolved to find a cure by 2033, before the next generation succumbs to FTD. We understand that someday soon, our form of FTD may be a candidate for antisense oligonucleotides (ASO) therapy or potentially even gene therapy, which would prevent the build up of the tau protein in the brain. We are actively seeking researchers who are willing to develop a therapy that will not only help our family members, but every person suffering from the effects of tau mutations. The publication of The Vanishing Family article led us to other MAPT families, and we have worked together to form a non-profit organization called Cure MAPT FTD* to build awareness and fund research that will help advance treatments for MAPT FTD and other neurodegenerative diseases caused by mutations on the tau gene. According to the National Institutes of Health, it is estimated that more than 30 million people are currently living with the burden of tau-related neurological diseases. Our family has provided initial funding, but we need additional funds to raise awareness, connect with MAPT families across the globe and identify willing research partners to advance therapy development. If we do not raise the money, more of our family members will succumb to FTD. We - and other families like ours who face MAPT FTD - will lose hope for a cure in time to protect the next generation. We ask for your help today to become part of something larger than yourself. Help us cure MAPT FTD - and other tau-related diseases - for the next generation. How can you get involved? Every dollar helps. If every person who reads or listens to The Vanishing Family article donates $20, we will meet our goal. Please share our LFEBridge with your network. If you do share this, and you know members of the family, please be respectful of our privacy and do not use our names or other personal information. This is very important. (Thank you for understanding.) You can also learn more or donate directly on the Cure MAPT FTD website. *Our organization has rebranded from the Tau Research Foundation and is doing business as Cure MAPT FTD. While the organization is operating under the tax exempt status of the Rare Village Foundation, every donation dollar goes directly to Cure MAPT FTD.




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