As told to <\/em>Jacquelyne Froeber<\/em><\/u> September 21, 2026, is <\/em>World Alzheimer’s Day<\/em><\/u><\/a>.<\/em> <\/p>\n I kept thinking maybe I\u2019d get lucky. <\/p>\n That\u2019s why I put off getting tested for the mutation many of my family members have for years. If I had it, I was basically guaranteed to have early-onset Alzheimer\u2019s disease.<\/p>\n The presenilin mutation is rare, but 16 people on my mother\u2019s side \u2014 including my mother \u2014 had tested positive for the mutation, and there was a 50\/50 chance that I had it, too. But I was holding out hope that my test results would be negative. After all, my two sisters didn\u2019t have it. <\/p>\n Unfortunately, I didn\u2019t get lucky. <\/p>\n My older sister and I were together when the doctor told me that I did, in fact, have the mutation. My whole body went into shock, and my stomach churned. I couldn\u2019t find my words, so my sister asked the tough questions as tears streamed down my face. <\/p>\n The questions that had loomed in the back of mind for so long played on a loop in my brain. But there was no more, \u201cWhat if I can\u2019t remember dad?\u201d Or \u201cWhat if I can\u2019t take care of myself?\u201d It was when<\/em>. <\/p>\n I was horribly nauseated for days after I found out. It was like my body was rebelling against me \u2014 furious with the knowledge. <\/p>\n But I knew in my heart that I had made the right decision. I was 29 years old and I wanted to know if I should be thinking about having kids. I\u2019d always pictured having children at some point, but once I knew my status, I had to make the decision not to \u2014 to give up on being a mom. And that broke my heart. <\/p>\n If I wasn\u2019t going to be a mother, I wanted to honor my family and continue my family\u2019s legacy of research. <\/p>\n My mother and uncles were strong role models. They\u2019d dedicated their lives to Alzheimer\u2019s research. The studies they were part of in the early 2000s helped answer questions about Alzheimer\u2019s disease, a form of dementia, that had baffled scientists for years. Knowing how rare it is to have the presenilin mutation, I wanted to do my part to help find a cure. <\/p>\n Not long after finding out my status, I enrolled in an ongoing trial called the Dominantly Inherited Alzheimer Network (DIAN) to help researchers learn more about how to diagnose, treat and prevent dementia. <\/p>\n Over the next decade, I went through countless scans, procedures, infusions and injections, all with the hope that the medications could stop Alzheimer\u2019s disease from forming.<\/p>\n I was in my late 30s when I learned that, based on my mothers age when she started showing symptoms of Alzheimer\u2019s disease, my estimated age of onset was 45 years old.<\/p>\n I was shocked. I\u2019d never been told that I had an estimated age that symptoms would start. I didn\u2019t even know one existed. I also wasn\u2019t sure that I wanted to know that information. But I couldn\u2019t unhear it.<\/p>\n The panic was swift. I felt like a ticking time bomb. <\/p>\n There were so many things I wanted to do. I wanted to swim and ride bikes and soak up the sun, so that\u2019s what I did. My (now) husband and I moved from Wyoming to the desert and we bought a house with a pool. <\/p>\n Around this time, I made a vow to myself to become more of a \u201cyes\u201d person and not to let the fear of the estimated age hold me back from living my life to the fullest. <\/p>\n I started doing more public speaking events and advocacy efforts to help raise awareness about Alzheimer\u2019s disease. Most recently, I started my own nonprofit with my husband called the White Flower Foundation<\/u><\/a>. The White Flower represents the first Alzheimer’s survivor. The foundation is dedicated to my 15 family members \u2014 including my mother \u2014 with the mutation who have passed away from Alzheimer\u2019s under the age of 60.<\/p>\n Their bravery allowed me the opportunity to be proactive instead of reactive \u2014 and not everyone gets that chance. <\/p>\n Today, I\u2019m happy to say that I don’t have any symptoms of early-onset Alzheimer\u2019s disease. I\u2019ve been on amyloid removal treatment for 11 years, and I\u2019m currently one of only 80 people in the world on a drug that researchers are hoping will prevent the onset of the disease before symptoms begin. <\/p>\n Most days, it\u2019s hard to wrap my head around the fact that these clinical trials and medications could change the lives of millions of people around the globe. But I\u2019ve been thinking a lot more about it lately. <\/p>\n I turn 44 in March 2027. Time is ticking but I still could be the first survivor of Alzheimer’s disease<\/a>. Maybe I\u2019m luckier than I thought. <\/p>\n Resources<\/strong><\/p>\n Alzheimer\u2019s Association<\/u><\/a> <\/p>\n HealthyWomen Brain Health Hub<\/u><\/a><\/p>\n This is Alz<\/a><\/u><\/p>\n Have your own Real Women, Real Stories you want to share? <\/em>Let us know<\/em><\/a>.<\/em><\/p>\n Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.<\/em><\/p>\n From Your Site Articles<\/p>\n Related Articles Around the Web<\/p>\n<\/p><\/div>\n<\/div>\n![\"\"](\"https:\/\/www.healthywomen.org\/media-library\/robin-with-her-sisters-chelsey-front-right-and-jess-mcintyre-rear-left.jpg?id=67805341&width=980\")
Robin, with her sisters, Chelsey (front right) and Jess McIntyre (rear left).<\/small><\/p>\n![\"\"](\"https:\/\/www.healthywomen.org\/media-library\/image.jpg?id=67805360&width=980\")
Robin, with her grandparents, Rutherford and Jack McIntyre. <\/small><\/p>\n