decision to have children in, 178–79, 241–42
DIAN and, 206–8
Klunk and, 157–59
deoxyinosine, 44
depression, 3, 5, 49, 136, 209–11
desipramine, 56
Deter, Auguste, 8–10, 11, 23, 30, 31, 69, 264
Deter, Karl, 8–9
Deter, Thekla, 8
Determan, Chelsey, 183–84, 196, 198, 208–9, 210, 211, 279–80, 281, 284, 287
DNA libraries, screening of, 44–45
Dominantly Inherited Alzheimer’s Network (DIAN), 207–8, 209, 214, 218, 223, 226, 232, 233, 241, 247, 255–56, 271, 274–77, 285
placebo group in, 225
volunteers for, 224–25
donepezil, 137, 144
Down syndrome, 42–43, 45, 170
Do You Remember Love? (TV movie), 114
drug research, 101
Duke University, 171
Eli Lilly and Company, 223
eotaxin, 255
European Medicines Agency, 200–201
Exelon, 218
Exeter, University of, 118
Exxon Valdez oil spill, 55
Facebook, 208
Family N, 32–33, 34, 35–36, 38, 59, 61, 65, 66, 67, 69, 129, 202
Fargo, N.Dak., 52, 58
Federoff, Howard, 285–86
Feldman, Robert, 23, 24, 30, 34, 65
fibromyalgia, 182–83
fluorodeoxyglucose (FDG), 96
Foncin, Jean-François, 31–32, 33–34, 35, 36, 37, 46, 59, 65, 69, 113, 129
Food and Drug Administration (FDA), 87, 101, 147, 174, 200–201, 221, 234, 251
“accelerated approval” designation of, 174–75
Center for Drug Evaluation Research of, 236
“clinical meaningfulness” test of, 234, 236
Forgetting, The: A Portrait of Alzheimer’s (documentary), 103–4
Fox, Michael J., 102
fracking, 193
Francom, Claire Kennedy, 241, 242, 259, 263, 265, 268, 283
Francom, Jeremy, 240–41
Frankfurt Asylum for the Insane and the Epileptic, 7
Freud, Sigmund, 11
Friedman, David, 144–45
frontal cortex, 64
Gajdusek, Carleton, 40–42, 43–44, 46, 87
ganteneraumab, 223
Garcia Márquez, Gabriel, 121
GE Healthcare, 101
gene cloning, 38, 43
GeneMatch, 286
gene mutations, 6–7, 45
Genentech, 249, 250–51
General Electric, 101
genes, 42–43
genetic counseling, 133
genetic counselors, 130
Georgetown University, School of Medicine at, 285
gingko biloba, 232
Gingrich, Newt, 175
Glenner, George, 42, 45, 94, 122
glucose, 172–73, 174, 199, 211, 247–48, 266
Goate, Alison, 129
Goldgaber, Dmitry, 38–41, 43–47, 65, 122, 202
Gómez, Javier San Pedro, 124–25
Gonzalez (old man), 130
Great Northern Railroad, 16
Gruner, J. E., 32, 34
Haldol, 90
Halliburton, 16
hallucinations, 5
Harvard University, 23
Harvey, Mike, 215
Harvey, Robin Miller, 133, 158, 178–79, 215–16, 244
Hayflick phenomenon, 33
Hayworth, Rita, 4
HDL, 220–21
head trauma, 236
Health and Human Services Department, US, 148
heart disease, 4, 275
Hebrew Immigrant Aid Society, 40
Heston, Charlton, 4
Heston, Leonard, 60–61, 64, 66, 68, 79
hippocampus, 235
histology, 60
HIV patients, 222
Ho, Carole, 250
Hofmann, Albert, 56
homozygotes, 131
Hornstein, Amber, 137, 242–44
Hornstein, Cole, 137, 243
Hornstein, Karla DeMoe, 16, 17–18, 19–20, 25, 26, 27–28, 29, 49, 50, 51, 53, 56, 58–59, 62, 67–69, 71, 72, 77, 78, 83, 85, 89, 103–5, 106, 107, 108–9, 111–12, 116, 119, 121, 122–23, 133, 139–40, 154, 156, 157, 160, 178, 181, 182–83, 184, 190, 194, 196, 197, 207, 224, 244, 267, 270–71, 272, 276, 278, 279, 282, 284, 289
and Brian’s move to locked facility, 161–63
as caretaker for family, 186–87, 208, 242–44
childhood memories of, 63–64
as free of Alzheimer’s mutation, 137–38
Gail’s death and, 281–82
Heston letter received by, 68, 79
marriage of, 53
Moe’s death and, 62–64
in move to Fargo, 52–53
parenting style of, 58
power of attorney held by, 161, 186
relationship with Moe of, 53–54
stress in, 239–40
Hornstein, Matt, 52–53, 58, 62, 72, 77, 78, 137–38, 180, 182, 208, 243, 289
House of Representatives, US, Subcommittee on Oversight and Investigations of, 148–49
Huntington’s disease, 5
Hydergine, 56, 57
hypertension, 56
Hyslop, Peter St. George, 35–36, 59, 65–66, 69–70, 129, 202
Indiana University, 108
“In Flanders Fields” (McCrae), 278
Insel, Thomas, 143, 149, 150–51, 153
Institute of Health and Medical Research, 33
Instituto Nacional de Vigilancia de Medicamentos y Alimentos (INVIMA), 248
insula, 64
Italy, 31
Iverson, Clarence, 16
Johann Wolfgang Goethe Frankfurt University Hospital, 12
Johns Hopkins University, 117
Johnson, Keith, 237
Johnson, Kim, 159–60, 161, 162
Jolie, Angelina, 233
Journal of the American Medical Association, 145, 189
Jung, C. G., 11
Jungk, Robert, 38
Justice Department, US, 150
Katz, Russell “Rusty,” 236
Katzman, Robert, 37–38, 46, 56, 119
Kennedy, Robert F., 229
Kerrey, Bob, 175
Kimball, Nebr., 73
Klunk, Bill, 96, 97–102, 103, 106, 116, 128, 153–54, 157–59, 162, 171–72, 177, 183, 188, 189–90, 191–92, 201, 206–7, 208, 215, 237, 243, 259, 265–67, 272–73, 287
Koprowski, Hilary, 202
Kosik, Ken, 125–32, 201, 202–3, 225, 252, 255, 261
Kraepelin, Emil, 9, 11–12, 30
Kupfer, David, 97, 98, 101
kuru (laughing sickness), 40, 41
Lake Tahoe, Calif., 53
Lalli, Matthew, 255
Langström, Bengt, 99, 100
Laramie, Wyo., 74, 259
Latvia State University, 39
Lautenschlager, Hank, 18, 25, 28, 62
Lautenschlager, Roxanne, 62, 190
Lawson, Julie Noonan, 103–4, 112, 113–14, 115–16, 118–19, 152–53, 154, 235
LDL, 220–21
Leah (Dawn’s daughter), 136, 158, 178, 179, 214, 215, 224
Leningrad Polytechnik Institute, 39
Lewy body dementia, 189
Lilly, 101, 232
Lipitor, 220–22
lithium, 146, 147
Lopera, Francisco, 121–32, 201–2, 203, 225, 245, 248, 250, 252, 261
Los Angeles Times, 152
LSD, 56
McCrae, John, 278
McIntyre, Chelsey, 240–41, 243, 259
McIntyre, Jessica, 107, 135, 180, 260–61
McIntyre, Lori DeMoe, 16, 19, 20, 26–27, 56, 63, 73–74, 89, 105, 112, 134–35, 140, 161, 181, 187, 188, 212, 224, 240, 241, 258–68, 269–73, 282, 283
Alzheimer’s symptoms of, 136, 177–78, 262–63
cognitive decline in, 265
fifty-third birthday party for, 267–68
genetic testing o
f, 177–78, 180–81
mood swings of, 269
in Tioga nursing home, 271–73
McIntyre, Robin, 135, 269–70, 271, 283
McIntyre, Steve, 27, 73, 74, 105, 134, 135–36, 178, 180, 188, 240, 241, 258–68, 269–73, 282
as outsider to DeMoe family, 187
mad cow disease, 42
Madrigal, Lucia, 123–24
markers, 66–67
Martsolf, John, 133, 134, 177–78, 179–80, 181, 182
Massachusetts General Hospital, 35, 107, 116
Mathis, Chet, 95–102, 106, 116, 128, 154, 172, 201, 211, 237
Mayo Clinic, 136, 288
MD Anderson Cancer Center, 200
Medellin, 122
Medicaid, 275
Medicare, 111, 275
memory care facility, 161
Mexico, 61
microtubules, 94
mild cognitive impairment (MCI), 247
Miller, Colleen, 133, 158, 178–79, 215, 216–19, 244, 253, 262
symptoms of, 218
Miller, Dawn, 133, 134, 158, 178–79, 214, 224, 244, 255, 263, 264
Alzheimer’s symptoms of, 136–37
as misdiagnosed, 136
Miller, Pat, 23, 54, 83, 133–34, 136, 158, 178, 219, 244, 254–55
death of, 186
Miller, Rob, 83, 178
Mini Mental State Examination (MMSE), 235–36
Minnesota, University of, 58, 60, 61, 67–68, 108
Minot, N.Dak., 62
Minot State Fair, 210
Molchan, Susan, 146–49, 151–52, 234
“morosis,” 4
Morris, John, 206–7, 225
Moscow State University, 38–39
Myers, Rick, 35
Namenda, 188
National Alzheimer’s Plan, 274
National Cancer Institute, 43
National Institute of Mental Health (NIMH), 85, 108–9, 137, 142, 143, 144–45, 147, 210
Sunderland study cancelled by, 153
National Institute on Aging, 147, 231–32
National Institutes of Health (NIH), 35, 37, 40–41, 43, 65, 93, 109, 116, 117, 142, 151, 152, 153, 275, 276, 277
funding of, 143–44
Institutional Review Board of, 143
internal research program of, 143
Noonan family specimens lost by, 154
Office of Management Assessment at, 149–50
policies for tracking its human tissue samples in, 147–48
public-private collaboration in, 143–44
neurofibrillary tangles, 94–95
New England Journal of Medicine, 232, 236
Newton, R. D., 30
New York Times, 202
NIH Clinic Center, 110
Nissl, Franz, 7–8, 10–11
Nissl stain, 7
Noonan, Butch, 119
Noonan, Dennis, 119
Noonan, Fran, 104, 115, 119–20, 235
Noonan, John, 114
Noonan, Julia Tatro, 113–14, 117–18, 121, 255
Alzheimer’s symptoms of, 113
Noonan, Kathi, 118, 119, 154
Noonan family, 103, 106, 107, 111, 114–15, 119, 123, 130, 142, 149, 152, 153–54
testing of, 116–17
North Carolina, University of, 44
North Dakota, oil boom in, 193–94
North Dakota, University of, School of Medicine and Health Sciences of, 133
North Dakota State Hospital, 29, 49
Novartis, 201
Obama administration, 274
obesity, 85
O’Connor, Sandra Day, 175
Oklahoma State University Institute of Technology, 84, 86
Olson, Monte, 75–76, 189, 253–54, 282
One Hundred Years of Solitude (Garcia Márquez), 121
osteoporosis, 174
Oxford Glycosciences Limited, 144
paisa, 125, 129, 131, 201, 203, 245–52, 255, 285
Papua New Guinea, 40
Parke-Davis, 220–22
Parkinson’s disease, 5, 102
PBS, 103
peptides, 169
Pfeifer, Andrea, 249–50
Pfizer, 144–45, 149–50, 153, 220–22
pharmaceutical companies, 143–44, 174–75, 199, 201, 232, 248
drug development costs and, 220–21
in search for Alzheimer’s drug, 222–23
Pickard, Sherry DeMoe, 178, 244
Alzheimer’s symptoms of, 226
in DIAN study, 226–27
Pittsburgh, University of, 95–96, 153, 157, 207, 209, 214, 225
Pittsburgh Compound B (PiB), 99–102, 103, 109–10, 111, 128, 153–54, 171, 172, 189, 201, 207–8, 211–12, 222, 232, 237
plaques, 10, 31, 32, 42, 60, 65, 86, 94, 98, 102, 170, 237
polio vaccine, 202
positron emission tomography (PET), 99
Positron Emission Tomography (PET) Research Center, 211
postpartum depression, 114
Potamkin Prize, 102
presenilin 1 (PS1), 69, 85, 93, 124, 126, 129, 201, 232, 249
Preskenis, Bob, 114
Preskenis, Dick, 114, 115
Preskenis, Kate, 114–15
Preskenis, Maureen Noonan, 104, 114–15, 119, 154
death of, 118
prion disease, 41–42
prions, 41–42
prison camps, 39
PS2, 85, 93, 232
reactive airway disease, 185, 196
Reagan, Ronald, 4
Red River Flood, 77
Regina, Saskatchewan, 61
Reiman, Eric, 171–75, 176, 206, 222, 223, 225, 232–33, 245–46, 247–48, 249, 251, 286, 288–89
study designed by, 199–205
Rice, Rikki, 195–96, 212–13
Ritalin, 146
Robinson, Sugar Ray, 4
Roche, 223, 249
Rochester, University of, 175–76
Rockwell, Norman, 4
Rose, Brianna, 163, 164, 242
Rose, Franklin, 163, 191–92, 283
Rose, Kassie DeMoe, 157, 163, 164, 284
genetic testing of, 191–92
Rose, Kingston Dakota, 165
Roses, Allen, 171, 172, 233
Roth, Martin, 31
St. Cloud, Minn., 49–50, 53, 56
Salk, Jonas, 119, 202
San Diego, University of, 37
Sarkilahti, Jon, 241
Schellenberg, Jerry, 66–67, 68, 69
Science, 61, 68
scrapies, 42
Senate, US, Special Committee on Aging of, 119–20
senile dementia, 12, 31
senility, 5, 30
sequencing, 44
Shionogi, 144
shock treatments, 114
Siberia, 39
Sillerud, Lindsey, 140–41, 190, 194, 241–42, 283, 284
Skol Bar, 159, 160
Society for Neurosciences, 46–47
solanezumab, 223–24, 232, 234
Southern California, University of, 231
Alzheimer’s Therapeutic Research Institute at, 170
Southwest German Psychiatrists, 37th Assembly of, 10–11
Soviet Union, 40
prison camps of, 39
Sperling, Reisa, 231–34, 236–38, 247, 266, 285, 288
State Department, US, 246
statins, 220–21
stimulants, 146
Strobos, Jur, 251
Summers, William K., 87
Sunderland, Pearson “Trey,” III, 109–10, 112, 116, 119, 121, 137–38, 140, 144–45, 147–48, 188, 202, 234
ambition of, 143
awards won by, 142
fall of, 142–54
Pfizer agreement with, 149–50
Pfizer’s payments to, 145
plea bargain of, 151
revocation of medical license of, 152
syphilis, 11
T807 (radiotracer), 237, 285
tacrine, 86–87
tangles, 31, 32, 60, 65, 98,
102, 126, 236, 237
Tariot, Laura, 246, 248
Tariot, Pierre, 173, 175–76, 206, 207, 225, 232–33, 245–46, 249, 250–51, 285, 286, 287–88
study designed by, 199–205
tauists, 169–76, 204
tau proteins, 6, 94–95, 96, 102, 110, 116, 126, 145, 146, 169–76, 204, 221, 222, 236–37, 247, 266, 285, 288
tau tangles, 6, 102, 126, 172, 285
Texas, University of, 200
Thatcher, Margaret, 4
Thioflavin S, 98
Thioflavin T, 98, 99
thiothixene, 56
Thompson, Brady, 72
Thompson, Debbie, 51–52, 156–57
Thorson, Christy, 54–55, 157, 163
Tioga, N.Dak., 14, 15–16, 19, 20, 196
crime in, 195
Tioga Dam, 54–55
Tioga Medical Center, 160
Tjosvold, Robin, 74, 134–35, 259–60
Tomlinson, Bernard, 31
tool pusher, 194
trephination, 32
triglycerides, 220–21
Uppsala University PET Center, 99
US Geological Survey, 16
vascular dementia, 57
vasogenic edema, 249, 287
Veteran’s Administration (VA), 57
Vietnam War, 23–24
Vittoria, 34
Vork, Becky, 217–19, 253, 262
Wall Street Journal, 172
Warner-Lambert company, 87
Washington University, 61, 66, 171, 224, 225, 226
Alzheimer’s Disease Research Center of, 206
Western Psychiatric Institute and Clinic, 96
White, E. B., 4
White, June, 58–61, 64, 66, 68, 69, 79, 108, 123, 154
Williams, Robin, 189
Williams, Susan, 189
Woodward, Joanne, 114
World Innovation Summit for Health (WISH), Dementia Forum of, 2223
Yarumal, 127
Simon & Schuster
1230 Avenue of the Americas
New York, NY 10020
www.SimonandSchuster.com
Copyright © 2017 by Niki Kapsambelis
All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. For information address Simon & Schuster Subsidiary Rights Department, 1230 Avenue of the Americas, New York, NY 10020.
First Simon & Schuster hardcover edition March 2017
SIMON & SCHUSTER and colophon are registered trademarks of Simon & Schuster, Inc.
For information about special discounts for bulk purchases, please contact Simon & Schuster Special Sales at 1-866-506-1949 or [email protected].
The Simon & Schuster Speakers Bureau can bring authors to your live event. For more information or to book an event contact the Simon & Schuster Speakers Bureau at 1-866-248-3049 or visit our website at www.simonspeakers.com.
Interior design by Ruth Lee-Mui
Jacket design and illustration by Pete Garceau
Library of Congress Cataloging-in-Publication Data
Names: Kapsambelis, Niki, author.
The Inheritance Page 36