Robin McIntyre Johnson: Life After Discovering She Carries the Early-Onset Alzheimer’s Gene

Join us Friday, June 6th, at 11 a.m. PT/2 p.m. ET for a Live Talk with dementia advocate Robin McIntyre Johnson. In the talk, McIntyre will share her story about carrying the Presenilin mutation for autosomal dominant Alzheimer’s Disease, a rare and early-onset form of the disease. These mutations, particularly in the PSEN1 and PSEN2 genes, are major causes of familial Alzheimer’s disease.  

McIntyre learned that she carries this mutation after a blood test at age 29. She got tested because a significant percentage of the people in her family carry the mutation as well; over the last 13 years, McIntyre has lost 16 family members to Alzheimer’s before they turned 60. As of now, McIntyre is not symptomatic of early-onset Alzheimer’s — but her doctors have told her that they expect symptoms to begin within the next three years, by the time she turns 45.

This Live Talk will not be the first time a member of McIntyre’s family has spoken about Alzheimer’s publicly; her extended family’s experience with early-onset Alzheimer’s Disease is the subject of a 2017 book titled “The Inheritance.”

Armed with this knowledge, McIntyre has been an active member of the Dominantly Inherited Alzheimer’s Network since 2011. She has also participated in a clinical drug trial for Gantenerumab, lending her voice and experience to help shape the future of Alzheimer’s care and prevention. She has also started a nonprofit to provide free mental health counseling for the other 64 people in the DIAN program.

McIntyre will discuss how this self-awareness has fueled her passion for advocacy. RSVP to learn more about the Presenilin mutation, and to receive the inside scoop on McIntyre’s experience and her plan to advocate for patients and caregivers alike.