Investigating an Alzheimer's mystery

Doug Whitney should have died two decades ago from early-onset Alzheimer’s Disease, but somehow he hasn’t developed any symptoms. His mother was one of 10 siblings, out of 13, in her family who died from the disease; the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer’s.

Doug, now in his mid-70s, is the only known person in the world to have the mutation and not have symptoms of the disease, which usually present before one reaches mid-50s. Since discovering his genetic predisposition to the disease, he has been studied by researchers at Washington University in St. Louis, allowing doctors to poke, prod, scan, and do everything they need to figure out why he hasn’t developed Alzheimer’s. He leads a quiet life in retirement outside of Seattle, but undergoes a gamut of scans, spinal taps and blood draws, and other mental and physical examinations annually so researchers can add to their long-term record of his genetics, physiological characteristics, and mental capabilities as he ages. One particular avenue of recent investigation is a significant build-up of heat-stress proteins in his brain possibly from his years working as a Navy mechanic, which some believe may make Doug less susceptible to the development of tau tangles in the brain, a hallmark of Alzheimer’s disease.

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Doug Whitney, 75, at his home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Preliminary brain images are displayed on a computer screen as Doug Whitney, 75, has a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. Data from the scan, which uses the MK-6240 radioactive tracer, will be used to analyze tau proteins in a patient's brain, a common indicator of Alzheimer's disease. Because of radioactive decay, the use of the tracer requires a precise timeline of medicine creation, injection, and scanning. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Doug Whitney, 75, points to a family tree diagram showing early-onset Alzheimer's inheritance and deaths in his family in the book "The Thousand Mile Stare: One Family's Journey through the Struggle and Science of Alzheimer's" at his home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. In the diagram, Doug is represented by the second white square that he is pointing to among symbols for his seven siblings; black squares indicate carrying the early-onset Alzheimer's genetic mutation. At the time of publication of the book, Doug did not know he carried the mutation. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
The glasses of Doug Whitney, 75, rest on a tray full of puzzle pieces as he works on a jigsaw puzzle at his home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Doug Whitney, 75, works on a jigsaw puzzle at his home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Doug, 75, (left) and Ione Whitney, 74, hold hands at their home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Doug, 75, (right) and Ione Whitney, 74, at their home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
A photo of the fourteen Reiswig siblings, including Mildred (center row, second from left), the mother of Doug Whitney, now 75, at his home in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Ione Whitney holds a photo of her husband Doug Whitney (center), then about 12, and brothers Leon (left) and Roger in their home in Port Orchard, Washington, USA, on Wed., March 12, 2025. The photo reads "After Sunday school" on the back and they think it was taken in 1960 or 1961. Doug's older brother Roger (right) died of early-onset Alzheimer's. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. At the time of publication of the book, Doug did not know he carried the mutation. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Sheet music for John Philip Sousa's "Stars and Stripes Forever" rests on a piano in the home of Doug Whitney, 75, in Port Orchard, Washington, USA, on Wed., March 12, 2025. Doug Whitney is the son of Mildred Reiswig, who died of early-onset Alzheimer's disease along with 9 of her 13 siblings. It was later discovered that the family carries a genetic mutation that makes them more likely to develop early-onset Alzheimer's, usually before the age of 53. Doug, a retired Navy mechanic, carries the mutation but has not developed symptoms of the disease. Because of this, Doug has been active in Alzheimer's research including volunteering for annual testing at Washington University in St. Louis. Doug's older brother Roger died of early-onset Alzheimer's but his other siblings have not developed symptoms. Doug's son carries the mutation, but in his early 50s has still not developed symptoms.
Doug Whitney, 75, and wife Ione Whitney, walk between appointments as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
The Memory and Aging Project suite is in the basement of the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine in St. Louis, Missouri, USA, on Mon., March 17, 2025.
Research nurse coordinator McCrae Johnson (in labcoat) signs in Doug Whitney, 75, of Port Orchard, Wash., for a CAT scan and MRI appointment at the Center for Clinical Imaging Research at the Mallinckrodt Institute of Radiology at the Washington University School of Medicine in St. Louis, Missouri, USA, on Mon., March 17, 2025. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Doug Whitney, 75, of Port Orchard, Wash., awaits a physical and neurological exam in the Memory and Aging Project suite in the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine in St. Louis, Missouri, USA, on Mon., March 17, 2025. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Research nurse coordinator Georgia Stubbs-Cucchi (left) and clinical research nurse Wendy Sigurdson prepare to help collect blood, skin, and cerebrospinal fluid samples from Doug Whitney, 75, (seated)as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. The CSF is taken from his spine and analyzed to monitor amyloid and tau levels that are present in most people with Alzheimer's Disease. Skin and blood samples are also analyzed for disease markers. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Blood samples from Doug Whitney, 75, (green box) stand on ice before being put in a -80c freezer as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. Blood, cerebrospinal fluid, and skin samples were taken to analyze for Alzheimer's related disease indicators. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Clinical research nurse Wendy Sigurdson (left) and research nurse coordinator Georgia Stubbs-Cucchi look at a blood plasma sample collected from Doug Whitney, 75, as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Laser guidelines help researchers align a Doug Whitney, 75, in the scanner before a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. The mask hardens as it cools and helps hold the patient's head in place during the scan. This scan uses the MK-6240 radioactive tracer, which is used to visualize tau proteins in a patient's brain, a common indicator of Alzheimer's disease. Because of radioactive decay, the use of the tracer requires a precise timeline of medicine creation, injection, and scanning. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
PET research technologist JulieAnna Hudson (standing) prepares Doug Whitney, 75, for a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. This scan uses the MK-6240 radioactive tracer, which is used to visualize tau proteins in a patient's brain, a common indicator of Alzheimer's disease. Because of radioactive decay, the use of the tracer requires a precise timeline of medicine creation, injection, and scanning. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Nuclear medicine technologist Nick Dunn places a mask on Doug Whitney, 75, before Whitney has a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. This scan uses a radioactive C-11 tracer that allows researchers to visualize amyloid plaques, associated with Alzheimer's Disease, in PET scan brain images. A mask that hardens as it cools is used to hold his head in place. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
A post-it note is filled with information on the timing and dosage of a C-11 radioactive tracer injected into Doug Whitney, 75, during a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. C-11 allows researchers to visualize amyloid plaques, associated with Alzheimer's Disease, in PET scan brain images. With a half-life of about 20 minutes, the use of the radioactive tracer requires a precise timeline. Using synchronized clocks and timers, the researchers keep careful notes about when the tracer is created, injected, and scanned. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
PET research technologist JulieAnna Hudson monitors progress and makes notes as Doug Whitney, 75, has a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. This scan uses the MK-6240 radioactive tracer which will be used to analyze tau proteins in the patient's brain, a common indicator of Alzheimer's disease. Because of radioactive decay, the use of the tracer requires a precise timeline of medicine creation, injection, and scanning. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Nuclear medicine technologist Nick Dunn injects a C-11 radioactive tracer into Doug Whitney, 75, before a PET scan as part of annual Alzheimer's Disease research testing that Whitney undergoes at Washington University in St. Louis, Missouri, USA, on Tue., March 18, 2025. C-11 allows researchers to visualize amyloid plaques, associated with Alzheimer's Disease, in PET scan brain images. With a half-life of about 20 minutes, the use of the radioactive tracer requires a precise timeline. Using synchronized clocks, the researchers keep careful notes about when the tracer is created, injected, and scanned. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Doug Whitney, 75, of Port Orchard, Wash., exits the machine after receiving a CAT scan and MRI scan at the Center for Clinical Imaging Research at the Mallinckrodt Institute of Radiology at the Washington University School of Medicine in St. Louis, Missouri, USA, on Mon., March 17, 2025. The scans are some of the ways that researchers look at the physical structure of Whitney's brain, including buildup of amyloid plaques and tau proteins associated with Alzheimer's Disease symptoms. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Doug Whitney, 75, (foreground) and wife Ione Whitney, walk to an appointment at the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine as part of annual Alzheimer's Disease research testing that Whitney undergoes in St. Louis, Missouri, USA, on Tue., March 18, 2025. The tracker keeps track of vital signs and lifestyle for a new research study related to Alzheimer's Disease. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Dr. Jorge Llibre-Guerra holds a DIAN research study notebook at the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine St. Louis, Missouri, USA, on Tue., March 18, 2025. DIAN stands for Dominantly Inherited Alzheimer Network and is an ongoing study of Alzheimer's Disease. Llibre-Guerra is an Assistant Professor Neurology at Washington University's School of Medicine who has been researching the brain of Doug Whitney. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Dr. Jorge Llibre-Guerra (lower center) shows recent research results to Doug Whitney, 75, and wife Ione Whitney from his research on Doug's brain at the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine as part of annual Alzheimer's Disease research testing that Whitney undergoes in St. Louis, Missouri, USA, on Tue., March 18, 2025. Llibre-Guerra is an Assistant Professor Neurology at Washington University's School of Medicine. On the wall hangs a quilt reading "Hope" made by wife Ione Whitney about a decade ago and auctioned as part of a fundraiser for Alzheimer's research. One of the doctors at WashU purchased bought the quilt at the auction and displayed it in the conference room. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Dr. Jorge Llibre-Guerra (left) speaks with Doug Whitney, 75, (blue plaid) and wife Ione Whitney, about recent updates to his research on Doug's brain at the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine as part of annual Alzheimer's Disease research testing that Whitney undergoes in St. Louis, Missouri, USA, on Tue., March 18, 2025. Llibre-Guerra is an Assistant Professor Neurology at Washington University's School of Medicine. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.
Doug Whitney, 75, hugs DIAN-TU clinical research coordinator Ellen Ziegemeir in front of a quilt reading "Hope" made by wife Ione Whitney in a conference room in the Charles F. and Joanne Knight Alzheimer's Disease Research Center at the Washington University School of Medicine in St. Louis, Missouri, USA, on Tue., March 18, 2025. The quilt was made about a decade ago and auctioned as part of a fundraiser for Alzheimer's research. One of the doctors at WashU purchased bought the quilt at the auction and displayed it in the conference room. Ziegemeier is in charge of the family conferences for relatives of those with Alzheimer's that precedes annual Alzheimer's research gatherings. DIAN stands for Dominantly Inherited Alzheimer Network and is an ongoing study of Alzheimer's Disease, and DIAN-TU is the part of the study focusing on experimental Alzheimer's drug treatments. Whitney carries the PSEN2 genetic mutation, which almost always leads to early-onset Alzheimer's disease and death by about age 55, as was the case with all members of his family who have inherited the genetic mutation. Whitney was identified as a so-called "escapee" in 2011 when it was discovered that he is one of three known such inheritors of the mutation who have not developed Alzheimer's and has taken part in a number of clinical research studies connected to WashU's Dominantly Inherited Alzheimer Network study, which includes annual visits to St. Louis for ongoing study.