Cystic Fibrosis Foundation
Cystic Fibrosis is a recessive genetic disorder that leads to progressive disability and results in early death in most cases. The Cystic Fibrosis Foundation is dedicated to providing information about the condition and to fund research that can find new and better cures for the genetic disorder. The foundation is also involved in interacting with the Federal legislative bodies with regards to any policies that are created pertaining to the condition.
The non-profit organization is a donor supported organization. It is one of the few organizations that are dedicated to this specific medical condition that many people suffer from. There are about 115 Cystic Fibrosis Care Centers and 95 Adult Programs in addition to 50 affiliate programs and 75 chapters and branch offices.
The model that the Cystic Fibrosis Foundation follows has been recognized by the National Institutes of Health (NIH) and some publications like Forbes, The New York Times, The Wall Street Journal and BusinessWeek.
Established in 1955, this foundation undertakes research in the area of cystic fibrosis, gets involved in fund raising to support the efforts of the scientists, funds drug discovery, advocates in order to keep the medical condition alive and as a top priority among the governments and medical industry. The organization also helps caregivers understand the nature of the disease in order to fight it better.
Some of the research that the Cystic Fibrosis Foundation has been doing has resulted in increasing the life expectancy of the people suffering from this condition. While those suffering from cystic fibrosis were not expected to live beyond elementary school at some time, most people are now living into their 40's and beyond.
The defective gene that causes cystic fibrosis has also been identified by the scientists at the foundation. This breakthrough research indicates that the day may not be far when we shall have a cure for this medical condition.
Purpose
The main objective of the Cystic Fibrosis Foundation is to ensure the development of a means that can cure and control cystic fibrosis so as to improve the lives of those who are suffering from the disease. There are a large number of care centers that the foundation has created throughout United States. These centers provide a high level of specialized care for cystic fibrosis patients. This has resulted in a longer and more fruitful life for the patients.
Being an accredited charitable organization of the Better Business Bureau's Wise Giving Alliance, the organization uses the funds that it is able to raise in a judicial manner. The standards of charitable accountability are extremely high across the foundation and can be seen in the operations of the place. At the same time, it is also understood that research of this nature needs to be conducted keeping in mind that while some things may bear fruit, others may not.
The condition has also been given the name of "65 roses" to make it easier for people who find pronouncing cystic fibrosis tough. The name was actually given by Mary G. Weiss's eldest son when he thought that she was working for 65 roses, as she called every social organization asking for help for research on cystic fibrosis since her 3 sons were suffering from the condition.
The online site of the Cystic Fibrosis Foundation has been created to offer all the information that anyone can ever need on the medical condition. Starting for information on someone who has just discovered the disease in a loved one to those who are looking at ways and means of making life comfortable for those who have it, the site details every aspect of the medical condition. There are also details about the ongoing research that may bring hope to people.
History
The Cystic Fibrosis Foundation was established in 1955 in Philadelphia, Pennsylvania in United States. It was started by a group of parents of cystic fibrosis parents who were looking at grants to fund research on the medical condition. These parents volunteered to create a foundation that looked after the needs of people with the condition and manage the various chapters and centers that were created over time.
The foundation also looks at hiring the best talent in the area of genetic research in order to find out new cures and treatment options for those suffering from the medical condition. Attracting the right kind of talent has been one of the main reasons for the success that the Cystic Fibrosis Foundation has met. The people who are recruited undertake new research in addition to looking at various aspects that can help in providing a better life for all those who are affected. People from areas and disciplines like molecular biology, immunology, medical chemistry and related fields come together to find the right kind of cure for the problem.
The discovery of the cystic fibrosis gene in 1989 has been the single most important milestone in the efforts of the Cystic Fibrosis Foundation. This was made possible due to international research collaboration. A healthy version of the same gene was possible so that it could be studied further.
In 1993, the gene therapy treatment was given to a Cystic Fibrosis Foundation patient for the first time and more CF gene therapy research was funded. Currently, there are various possible CF therapies that are in the pipeline; something that has been made possible due to the multi-pronged approach that the Cystic Fibrosis Foundation has taken all along. Some of the key programs that are under study at the moment include clinical research, drug development, therapeutic options and others.
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