ADDF in the Media
National Post - A First-Hand Account of Alzheimer’s ‘Long Goodbye’
Joan Sutton Straus was a popular columnist and feature writer in Toronto until 1982 when she was swept away by her Prince Charming. She married Oscar Straus of New York City, an elegant diplomat, businessman and philanthropist, and the two began an idyllic existence among the world’s rich and famous.
But in 2006, he was diagnosed with Alzheimer’s disease and the two began their final, poignant years together until his death last year.
“I have come to think of Alzheimer’s disease as a cat burglar – a stealthy thief with infinite patience. He doesn’t steal all your memory at once – he just slips in and takes a little bit here and a little bit there and then disappears for a while,” Joan writes in her new book, The Alzheimer’s Diary: One Woman’s Experience from Caregiver to Widow.
Joan has written an important book about a disease that will likely touch everyone eventually and can bankrupt the world’s healthcare systems unless a cure is discovered. The Rand Corporation estimates that Alzheimer’s is the most expensive illness, if you factor in years of caregiving, and research has yet to yield a cure.
Joan’s book, from the viewpoint of a caregiver, is an emotionally charged eulogy by a spouse who cared for her husband at home until the end.
“Alzheimer’s is a disease of the brain that is paid for with the currency of the heart,” she said. “Old age is definitely not for sissies.”
She is a member of the Board of Overseers of the Alzheimer’s Drug Discovery Foundation (ADDF), which was co-founded by Leonard A. and Ronald S. Lauder of the Estée Lauder cosmetics family. All book proceeds will support the ADDF’s Canadian arm.
“Joan’s book is important. She’s able to tell people in a very real way what it’s like to care for someone with this disease. One in three people at age 80 will have Alzheimer’s disease, and two of the other three will be caring for someone with Alzheimer’s,” said the ADDF’s Founding Executive Director and Chief Science Officer Howard Fillit, MD, a geriatrician and neuroscientist.
He describes the Foundation as “biomedical venture philanthropy” which has funded US$65-million in 450 Alzheimer’s drug discovery programs in 18 countries. A number of these research initiatives have been spun out into biotechnology companies. Any returns are then re-invested in new research.
“Our mission is completely focused on accelerating the discovery and development of new drugs to treat and prevent Alzheimer’s disease. We are unique because that’s all we do … no patient or caregiver education or advocacy. We only fund drug discovery, development and prevention. Drug discovery is the phase of research that translates new biology into the creation of new drugs,” he said.
One of their biggest achievements came about from funding a program at the University of Pennsylvania between 2000 and 2004. The goal was to develop an agent for neuroimaging that could identify amyloid plaques, a hallmark of Alzheimer’s disease, in the brains of living persons who have, or will get, the disease.
“Through our grant, we enabled the development of brain imaging to detect the amyloid plaques characteristic of Alzheimer’s. A company was then spun out of this discovery called Avid Radio Pharmaceuticals with venture capital funds,” he said. “In 2010, Avid was sold to Eli Lilly. In 2012, it became the first in history to get FDA approval as a diagnostic test for Alzheimer’s. The test is useful for early diagnosis, and is already accelerating drug development by better identifying patients with the illness.”
The Foundation helps build bridges from basic biology to new drugs. “Basic biology must be passed to scientists involved in specialized areas of drug research like medicinal chemistry. Medicinal chemists are the scientists who can actually create a new drug,” he explained.
“Laboratory and animal testing must also be completed before human testing can begin.” Testing in humans is known as drug development and the Foundation gets involved here too by funding clinical trials of promising drugs.
“We also provide added value and resources. We employ four PhD scientists, and I’ve been in the field 35 years, and we are always looking for opportunities to work with the scientists themselves to accelerate their work. Many are biologists and don’t know how to create drugs,” he said.
The Foundation has created a proactive, virtual online marketplace, called ADDF Access, a website that connects scientists with CROs (Contract Research Organizations), access to consultants with drug discovery expertise and a platform for virtual discussions. The site allows a scientist with a new idea for a drug to connect with companies we have vetted that are experts in providing drug discovery services.,” he said.
ADDF has funded several Canadian researchers over the years. In 2010 ADDF-Canada was formed to further this work, with support from ADDF in the USA. ADDF-Canada is currently supporting two clinical trials in Toronto as well as other studies to find drugs to treat Alzheimer’s disease.
Prevention is also part of the Foundation’s mission. “As a result of the new amyloid brain imaging test, we now know that people start developing Alzheimer’s disease 20 years before symptoms appear. Prevention studies are now possible. We also now believe that prevention is possible by maintaining a heart-healthy lifestyle and staying cognitively and socially active to stimulate the brain,” he said.
This book is worth reading or giving to loved ones that are going through this difficult ending as did Ronald Reagan, singer John Denver and many others we never heard about. Joan has brought the heartache and sacrifice out into the open through her poignant book that describes what Nancy Reagan described as “the long goodbye.”