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Find A Cure Transit Cystic Fibrosis Resources:
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My name is Nathan. My wife, Tricia has Cystic Fibrosis (CF) and had been preparing for a double lung transplant until we discovered we were pregnant. Surviving a premature birth, double lung transplant and lymphoma is just the beginning of our story.
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The Blooming Rose Foundation was created to give hope to families immediately following diagnosis, fundraise to positively reach a vast array of individuals and offer an online resource for individuals, families, and friends to find up to date research, links to encouraging websites and blogs as well as a way to connect with other families and adults with CF.
book: Honest Medicine by Julia Schopick
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HONEST MEDICINE introduces four lifesaving treatments that have been effectively treating--and in some cases curing--people for 25-90 years.
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Book: Your Medical Mind by Dr. Jerome Groopman that focuses on patient decision making
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Boomer Esiason was a NFL quarterback in 1993 when he learned his young son, Gunnar, was afflicted with the deadly disease cystic fibrosis. Not one to back down from a fight, he immediately launched the Boomer Esiason Foundation and vowed to eliminate the threat of cystic fibrosis.
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Making lives of those with Cystic Fibrosis easier one breath at a time. Breathe 4 Tomorrow is 501c3 that was founded to help families and patients living with Cystic Fibrosis with the extra costs that are associated with living with the disease. They help with utility bills, medical bills, lodging, gas and almost anything else that a family may need.
Cells That Heal Us From Cradle To Grave: A Quantum Leap in Medical Science
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book on stem cell research
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Community site sponsored by Genentech.
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CF Riders, along with our partner foundation, Laps for CF, is a non-profit organization based in Birmingham, AL dedicated to raising awareness of Cystic Fibrosis, and providing financial support in all areas of need for CF research, treatment, care, and improved quality of life.
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A newsletter for adults who have CF.
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CF community site sponsored by Novartis
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Pod cast hosted by Jerry Cahill
CHOIR Stars for the Creative and Performing Arts
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C.H.O.I.R. Stars for the Creative and Performing Arts® is a non-profit organization committed to providing hope and inspiration through the creative and performing arts to teens and young adults with a variety of health conditions. Our organization holds weekend arts workshops throughout the year for teens and young adults with chronic health conditions and their siblings, and offers additional programming such as our multiple free family arts outings a year. In addition, we provide arts outreach to youth in hospitals, and provide awareness for the health conditions our C.H.O.I.R. families are facing.
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The Boomer Esiason Foundation's Club CF is an online “club” for individuals with CF of various ages who are LIVING, BREATHING and SUCCEEDING, and for caregivers who are the true warriors in their support and fight against CF.
Cochrane Cystic Fibrosis and Genetic Disorders Group
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The Cochrane Cystic Fibrosis & Genetic Disorders Review Group comprises an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders.
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Stacey's blog. She is a 35 year old wife, mother and social worker, living with Cystic Fibrosis.
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The Children's Organ Transplant Association (COTA) exists to assist patients who require a life-saving organ, bone marrow, cord blood or stem cell transplant. We work with all transplant patients age 21 and under for any disease complication, and with any patient who needs a transplant due to a genetic disease such as Cystic Fibrosis or Sickle Cell Anemia.
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The CF Center at Stanford is an integrated disease management program that follows patients from diagnosis through adulthood.
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The new Cystic Fibrosis Mutation Database (CFTR1) is devoted to the collection of mutations in the CFTR gene for the international cystic fibrosis genetics research community.
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The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
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The Cystic Fibrosis Institute (CFI) is committed to supporting those affected by cystic fibrosis in the Chicagoland area and to making a difference by being a meaningful and active source of assistance and advocacy for all CF individuals and families for dealing with the everyday challenge of cystic fibrosis.
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Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.
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Cystic Fibrosis Worldwide began our mission to aid people born with cystic fibrosis in 2002. Since our inception we have reached out globally focusing on developing countries and countries where little is known about CF.
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We are patients and families from all over the world, sharing our experiences with CF and gaining power over our disease and our futures. We are joined together to grow our knowledge and reach amazing goals. Please join our community and our movement--together we are building knowledge and reaching for a cure.
David's Law - congressional petition re CF
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Congressional Petition for CF
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The Denny Hamlin Foundation will focus primarily on raising awareness and funding for the specific needs of individuals afflicted with Cystic Fibrosis. As such, we will partner with organizations whose purpose is to research treatment and to provide care for individuals with Cystic Fibrosis. The Foundation will also support chronically ill children with other debilitating illnesses.
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A resource for disabling conditions that can be considered severe enough by the Social Security Administration (SSA) to qualify a person for Social Security disability benefits.
These conditions can interfere with an individual’s ability to achieve gainful employment, thereby making that person eligible for SSDI or SSI benefits.
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Dottie Lessard is a Personal Empowerment Coach, Nike Athlete, author and life inspiration to all she meets and has created a CF centric not profit called Dottie's Dream.
Fear Not [book on surviving kidney cancer]
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This father and son team up to tell a story of faith and healing. This devotional styled book also offers personal, practical, and biblical insights that sustained these men during a struggle for health and faith. "God had a purpose for keeping me here."
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The sole purpose and undying mission of the Fight
Forever Foundation is to Find a Cure for all the brave
children and adults who battle with CF now, their families, and the future generations that will be affected by this disease.
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Sponsored by Genentech, the Heroes of Hope program seeks to recognize and salute unique individuals with cystic fibrosis who strive to live full, productive lives and serve as role models to others, while managing their own healthcare needs. Nominate someone you know to be a Hero of Hope today.
http://www.cysticfibrosispenpalclub.com/
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Support group for those with CF
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Podcast Series hosted by Jerry Cahill.
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Joey's Song is a series of CD's that brings together national and international artists to raise money for epilepsy research and advocacy, in honor of Joey Gomoll. Joey was just shy of 5 years old when he passed away in March 2010. In the months since then his father, and a passionate group of musicians, friends and supporters, have pulled together a collection of rare and unreleased music, as well as special recordings and children's songs. Joey's Song: Volume One and Joey's Song for Kids: Volume 1 were released January 25, 2011! Get your copies today!
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Resources to support spiritual well-being for those with chronic illness. Scholarly articles on the inter-relationship between spirituality and medicine. My personal struggles living with an incurable metastatic cancer.
National Organization for Rare Diseases (NORD)
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NORD’s vision and guiding principles on which our advocacy initiatives are based:
A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.
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Dr. Julie Desch established New Day Wellness (NDW) in 2005. NDW is a non-profit organization with the mission of providing health and wellness coaching and fitness training to individuals with chronic disease. Dr. Desch is a retired physician with cystic fibrosis who, at 46 years of age, has jumped enthusiastically into her second career
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Informational site created by Norma Plourde.
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Not a Wasted Breath is the story of how one man turned his obstacles into opportunities. Told from the viewpoint of a person who had cystic fibrosis and knew from an early age he would have a shortened life span, it contains his writings during his last four months of life as he waited in the hospital for a transplant that didn’t come in time; his story from his mother’s viewpoint; and reflections by nine persons impacted by his deep faith in God, his determination, his work ethic, and great sense of humor.
Partnership for Prescription Assistance
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Site that help people who are uninsured get treatment.
Their services are free.
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Patient Services, Inc. (PSI) is the "ground breaking" 501(c)(3) non-profit, charitable organization of its kind. Two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and co-payments. Since 1989 we have led the charge to provide much needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas.
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Caring for Caregivers
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RockScar Love is inspiring passionate lives through clothing. We celebrate sexy scars, the lessons they teach us and the strength they create.
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Rosemary Quigley is an assistant professor of medical ethics and health policy at Baylor College of Medicine in Houston. She is a cystic fibrosis patient and had a double-lung transplant one month ago.
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A blog about living with CF.
Find A Cure Transit Cystic Fibrosis Resources:
Click an option on the listing key to reorganize search results.