As Jacquelyne Froeber tells it
September 21, 2026 is World Alzheimer’s Day.
I kept thinking that maybe I would get lucky.
That’s why I put off getting tested for the mutation that many of my family members have for years. If I had it, I would basically be guaranteed early onset Alzheimer’s disease.
The presenilin mutation is rare, but 16 people on my mother’s side – including my mother – had tested positive for the mutation, and there was a 50/50 chance that I had it too. But I hoped my test results would come back negative. After all, my two sisters didn’t have it.
Unfortunately I didn’t have any luck.
My older sister and I were together when the doctor told me that I actually had the mutation. My whole body went into shock and my stomach churned. I couldn’t find my words, so my sister asked the hard questions as tears streamed down my face.
The questions that had been floating around in the back of my mind for so long were playing on a loop in my brain. But there was no more “What if I don’t remember Dad?” Or “What if I can’t take care of myself?” It was when.
Robin with her sisters Chelsey (front right) and Jess McIntyre (back left).
After I found out, I felt terribly nauseous for days. It was like my body was rebelling against me – angry with the knowledge.
But I knew in my heart that I had made the right decision. I was 29 years old and wanted to know if I should think about having children. I had always imagined having children at some point, but once I knew my status, I had to make the decision not to – to give up motherhood. And that broke my heart.
If I didn’t want to become a mother, I wanted to honor my family and continue my family’s research legacy.
My mother and uncles were strong role models. They had dedicated their lives to Alzheimer’s research. The studies they were involved in in the early 2000s helped answer questions about Alzheimer’s disease, a form of dementia, that had puzzled scientists for years. Knowing how rare the presenilin mutation is, I wanted to do my part to find a cure.
Shortly after learning my status, I signed up for an ongoing study called the Dominantly Inherited Alzheimer Network (DIAN) to help researchers learn more about diagnosing, treating and preventing dementia.
Over the next decade, I underwent countless scans, procedures, infusions and injections, all in the hope that the drugs might prevent the development of Alzheimer’s disease.
I was in my late 30s when I learned that based on my mother’s age when she began showing symptoms of Alzheimer’s disease, I was 45.
I was shocked. I was never told an estimated age at which symptoms would appear. I didn’t even know one existed. I wasn’t sure I wanted to know this information either. But I couldn’t ignore it.
Robin with her grandparents Rutherford and Jack McIntyre.
The panic came quickly. I felt like a ticking time bomb.
There were so many things I wanted to do. I wanted to swim, ride my bike and enjoy the sun, so that’s what I did. My (now) husband and I moved from Wyoming to the desert and bought a house with a pool.
It was around this time that I vowed to become more of a yes person and not let fear of my estimated age stop me from living my life to the fullest.
I began giving more public speaking engagements and advocating for Alzheimer’s disease. Most recently, I founded my own non-profit organization with my husband called the White Flower Foundation. The White Flower represents the first survivor of Alzheimer’s disease. The foundation is dedicated to my 15 family members – including my mother – with the mutation who died of Alzheimer’s under the age of 60.
Her courage gave me the opportunity to be proactive instead of reactive – and not everyone gets that chance.
Today, I am happy to say that I have no symptoms of early-onset Alzheimer’s disease. I have been taking amyloid removal treatment for 11 years and am currently one of only 80 people in the world taking a drug that researchers hope will prevent the onset of the disease before symptoms appear.
Most days, it’s hard for me to imagine that these clinical trials and medications could change the lives of millions of people around the world. But I’ve been thinking about it a lot more lately.
I will be 44 years old in March 2027. Time is running out, but I could still be the first survivor of Alzheimer’s disease. Maybe I’m luckier than I thought.
resources
Alzheimer’s Association
HealthyWomen Brain Health Hub
This is Alz
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