The Farr Disease

ISBN-13: 9781938406485 / Angielski / Miękka / 2015 / 240 str.

Dan Swainbank

Opis

In 1880, Dr. William Osler of McGill University in Montreal published an article in a medical journal entitled, "Heredity in Progressive Muscular Atrophy as Illustrated in the Farr Family of Vermont." In that article he reported on the case of a farmer from Sutton, Vermont named Erastus Farr, and told the story of Erastus's father, an uncle and an aunt, and four cousins, all of whom had died young of this disease of muscle wasting, now known as Familial Amyotrophic Lateral Sclerosis. In his well-researched book, Dan Swainbank tells the rest of the continuing story: of the family's losses over the next 135 years, of the advances in our understanding of ALS and the discovery of the family's defective gene in 1993, of the family's involvement in research and clinical trials, and the on-going search for a cure. It is also an account of a family's love and support, and the love and support of a community which keeps the hope alive that someday this sad story will have a happy ending. "This family has been of immense importance to studies of ALS. Through this family, and others like it, it was possible to discover the first ALS genes. In turn, those led to cell and animal models of the disease which have been critical in efforts to find treatments for ALS. It is possible that the first types of ALS to be treated will be those that have been so devastating to this wonderful family." Dr. Robert H. Brown. University of Massachusetts Medical School, Professor and Chair of Neurology. Discoverer of the first ALS-related gene. "It is because of the involvement in research of the Farr family and their descendants that we learned about SOD1 ALS and ways to treat it. Their love for each other and passion to help others fueled this research and has given hope to many who live with ALS. We are at an unprecedented time where several clinical trials to silence the genetic mutation in SOD1 are possible and happening. These include the use of antisense oligonucleotides and gene therapy approaches. It is a time of promise for SOD1 families and all people with ALS. Thank you Curtis, Clif, Mary and Dennis for inspiring all of us to fight against SOD1 ALS, until the cure is found." Dr. Merit Cudkowicz, Chief and Director of ALS Program, Neurology Department, Massachusetts General Hospital "As a member of a family with a 150-plus year history of life and death with ALS, we understand just how insidious this disease can be. We do not want to be an orphan disease. We want to be adopted into the minds, hearts and financial support of caring individuals and organizations. This disease is too insidious to be allowed to continue to make "orphans" in young families who lose their mothers and fathers." Susan Lynaugh, Farr family member and activist All profits from the sale of this book will go toward the search for a cure for ALS at Massachusetts General Hospital.