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Author: Philip Reilly Publisher: ISBN: 9781621821373 Category : Medical Languages : en Pages : 0
Book Description
"This book is about the struggle to save the lives of children who, because of a roll of the genetic dice, are born with any one of more than several thousand rare genetic disorders. It recounts the now century long effort of small groups of physicians and scientists to take on some of these genetic diseases. In many cases just a few physician-scie
Author: Philip Reilly Publisher: ISBN: 9781621821373 Category : Medical Languages : en Pages : 0
Book Description
"This book is about the struggle to save the lives of children who, because of a roll of the genetic dice, are born with any one of more than several thousand rare genetic disorders. It recounts the now century long effort of small groups of physicians and scientists to take on some of these genetic diseases. In many cases just a few physician-scie
Author: Karen Haberberg Publisher: powerHouse Books ISBN: 9781576878613 Category : Photography Languages : en Pages : 0
Book Description
An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences. Life often presents challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and will we can find inspiration and hope. An Ordinary Day displays unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions. Readers will fall in love with these children, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book invites us to connect with kids like Ethan, a nonverbal 7-year-old who learns to sign to communicate his needs, 5-year-old Madison who has taken her first steps after years of crawling, and Jonathan, a 9-year-old boy who finally learns to eat with a spoon after many failed trials. Tasks often taken for granted, are profound triumphs for children afflicted with rare genetic conditions. The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all. Poignant and revelatory, An Ordinary Day illuminates what it means to be a family.
Author: David Fajgenbaum Publisher: Ballantine Books ISBN: 1524799629 Category : Biography & Autobiography Languages : en Pages : 266
Book Description
LOS ANGELES TIMES AND PUBLISHERS WEEKLY BESTSELLER • The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure—and became a champion for a new approach to medical research. “A wonderful and moving chronicle of a doctor’s relentless pursuit, this book serves both patients and physicians in demystifying the science that lies behind medicine.”—Siddhartha Mukherjee, New York Times bestselling author of The Emperor of All Maladies and The Gene David Fajgenbaum, a former Georgetown quarterback, was nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime. Miraculously, Fajgenbaum survived—only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide. Praise for Chasing My Cure “A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope.”—Angela Duckworth, #1 New York Times bestselling author of Grit “[A] remarkable memoir . . . Fajgenbaum writes lucidly and movingly . . . Fajgenbaum’s stirring account of his illness will inspire readers.”—Publishers Weekly
Author: Robyn Schneider Publisher: Simon and Schuster ISBN: 1471115496 Category : Juvenile Fiction Languages : en Pages : 295
Book Description
John Green's The Fault in Our Stars meets Rainbow Rowell's Eleanor & Park in this darkly funny novel from the critically acclaimed author of The Beginning of Everything. Up until his diagnosis, Lane lived a fairly predictable life. When he's sent to Latham House, a boarding school for sick teens, Lane thinks his life may as well be over. But when he meets Sadie and her friends - a group of eccentric troublemakers - he realises that maybe getting sick is just the beginning. That illness doesn't have to define you, and that falling in love is its own cure. Robyn Schneider's Extraordinary Means is a heart-wrenching yet ultimately hopeful about true friendships, ill-fated love and the rare miracle of second chances. Praise for Extraordinary Means 'This captivating book about life, death, fear, and second chances will fly off the shelves' VOYA 'Schneider’s subtlety, combined with themes about learning to live life fully, makes this an easy recommendation for those seeking titles similar in premise to John Green’s The Fault in Our Stars' School Library Journal 'The perfect read-next for fans of the sick-lit trend and readers looking for a tear-stained romance' Bulletin of the Center for Children’s Books 'Fans of John Green’s blockbuster The Fault in Our Stars who are eager for more of that kind of story will likely be satisfied.' Booklist
Book Description
Anna is a spunky 9-year-old girl who loves acting and drawing Anna has Noonan syndrome, a genetic condition that affects how her body grows. Join Anna, her mother and her dog Sammy as they go through a busy and adventure-filled week, ad see what living with Noonan syndrome means for Anna!
Author: Deborah Katz Publisher: ISBN: 9781711299273 Category : Languages : en Pages : 34
Book Description
Rare Is Everywhere takes readers on a journey through the animal kingdom, revealing that grasshoppers can be pink, tigers can be white, and lobsters can be blue. Showcasing eleven incredible animals through vibrant illustrations and playful poetry, the book skillfully blends science with art and encourages children to recognize and accept diversity in themselves and in others. Each page features a rare animal alongside its everyday counterpart, and accompanying rhyming text reveals both their shared traits and their differences. With a joke corner to further capture children's imagination and a glossary that provides more information about each animal and the genetic changes that shape their appearance, Rare Is Everywhere is not only a stunning picture book but also a valuable resource. All ages, and species, will enjoy this book.
Author: Taline Dorna Publisher: ISBN: Category : Languages : en Pages : 32
Book Description
A family's journey of how an incredible young boy's cancer diagnosis leads to bravery, self discovery, and a new extraordinary eye! An illustrated children's story written to aid patients, and help their siblings understand retinoblastoma from diagnosis, to enucleation, to living with an ocular prosthesis. Join this family as they learn of a child's cancer diagnosis at the doctors office, treatment at the hospital, and acceptance of a new prosthesis at home. Meet all the wonderful doctors, ophthalmologists, nurses and ocularists that help out along the way. About the author Taline Dorna is an elementary teacher (grade one), by profession; and a mother to 3 children under the age of 6. When her youngest was 5 months old, he was diagnosed with retinoblastoma (a very rare eye cancer). She searched high and low for story books that feature a child with a prosthetic eye and they were few and far between. As a result, she decided to write a children's story book that could be used in a classroom setting as a social story; or for newly diagnosed patients, as well as a way to spread general awareness about retinoblastoma.
Author: Vickie Rubin Publisher: Page Publishing Inc ISBN: 1662407424 Category : Family & Relationships Languages : en Pages : 127
Book Description
2022 Readers' Favorite Gold Medal Winner in Non-Fiction - Memoir Genre Award-Winning Memoir “Courageously exploratory, making for a truly enlightening read." (Kirkus Reviews) Raising Jess is the powerful story of one family’s survival when faced with adversity. Written with compassion, honesty, and humor, it tells of a family changed forever by the birth of a child with a rare chromosome deletion and their courageous decision to choose hope. Facing the challenges of caring for her daughter, marriage struggles, and the question of having more children, Vickie Rubin gives a glimpse into the world of her family and transformation while Raising Jess. This beautiful, gripping memoir will delight and leave you wanting more. "This is an inspiring story of tragedy and triumph, brilliantly and powerfully told. I highly recommend it." - Ashley Adams, Author “This is a triumphant tale.” - Cathy Shields, Author" "A heartwarming, compassionate story. This story will bring tears to the eyes of readers as they are educated and enraptured by one family’s journey with a child with special needs.” (5-Star Review by Emily-Jane Hills Orford for Readers' Favorite) “Couldn’t put it down! Raising Jess is an amazing book! Vickie Rubin’s writing is masterful! Highly recommend.” - Mike Steklof, Ed. D. “Beautiful Insightful Narrative That Resonates Deeply. I feel enlightened, inspired, hopeful and transformed by Vickie's story.” - Janet G. “Beautifully written and a must-read for anyone that knows someone with disabilities or wants to know a family’s perspective.” - Jill G. “I couldn’t put it down. Get a copy of this book—so pure, raw, and beautiful.” - Ashleigh Bussinger “Vickie reveals her Soul to the reader. A Must-Read for All” - Lori N. Vickie Schlanger Rubin, M.S Ed., three-time award-winning author, contributes essays to Newsweek, Buffalo News Opinion, and blogs worldwide. Vickie is an experienced public speaker and passionate advocate for families of children with disabilities. Her blog, Vickie's Views (www.vickierubin.com), gives a heartwarming and humorous view of everyday life.
Author: Hayley Okines Publisher: Headline Accent ISBN: 1908192569 Category : Health & Fitness Languages : en Pages : 163
Book Description
Hayley Okines is like no other 13-year-old schoolgirl. In Old Before My Time, Hayley and her mum Kerry reflect on her unusual life. Share Hayley's excitement as she travels the world meeting her pop heroes Kylie, Girls Aloud and Justin Bieber and her sadness as she loses her best friend to the disease at the age of 11. Now as she passes the age of 13 - the average life expectancy for a child with progeria - Hayley talks frankly about her hopes for the future and her pioneering drug trials in America which could unlock the secrets of ageing for everyone...
Author: John Hawkins Publisher: ISBN: 9781621823704 Category : Biography & Autobiography Languages : en Pages : 254
Book Description
Henri Termeer was one of the first of a pioneering group of business executives who built a disparate group of fledgling companies into a biotech industry that has driven decades of therapeutic innovation. During a 28-year career at Genzyme, including 26 years as CEO, he created a process of drug development that for the first time was patient-centered. He also helped forge biotech's public policy agenda and inspired a generation of entrepreneurs to take on large and important challenges. An extraordinary number of today's biotech leaders were directly mentored by Termeer. His own leadership was iconoclastic: He broke rules and took risks, setting ambitious goals and finding novel ways to reach them. In doing so he transformed an industry and brought hope to patients with a range of diseases previously deemed too rare to justify the investment needed to support the development of specific therapies. In Conscience and Courage, John Hawkins, an insightful analyst of healthcare leaders, reveals the philosophy, principles, methods, and habits of a prominent and successful CEO who defied convention to create an investor-owned global enterprise that put people before profits and improved the lives of thousands of forgotten patients.
Author: Philip Reilly
Author: Philip Reilly
Author: Karen Haberberg
Author: David Fajgenbaum
Author: Robyn Schneider
Author: Rene Pierpont (Pediatric Neuropsychologist)
Author: Deborah Katz
Author: Taline Dorna
Author: Vickie Rubin
Author: Hayley Okines
Author: John Hawkins