The Cystic Fibrosis Association of North Dakota (CFA) devotes its time and financial resources to helping North Dakotans with cystic fibrosis (CF) and their families by:
- Assisting with the costs of medications and medical equipment not covered by insurance
- Providing funding for lung transplants
- Coordinating support group meetings
- Providing college scholarships so young people with cystic fibrosis can focus on studies, and not compromise their education because they need jobs to support their educational endeavors
- Informing the public about cystic fibrosis and current research
- Lobbying to protect individuals with CF and their families from undergoing undue hardship and ensuring their right to receive health care coverage.
The CFA is a statewide non-profit corporation. It is not affiliated with any national or international parent organization, nor does it receive any government assistance.
A dedicated staff of four professionals coordinates activities throughout the state.
The Cystic Fibrosis Association of North Dakota was formed by parents of children with cystic fibrosis in 1980 to raise funds for research, education and assistance to persons suffering from cystic fibrosis. The Association is not affiliated with the Cystic Fibrosis Foundation or any other parent organization, nor does the Association accept or receive any government funding.
Since its inception, the Association has assisted hundreds of North Dakotans and provided almost two million dollars in programs and services to assist North Dakotans with CF.
The Cystic Fibrosis Association of North Dakota exists to assist families and individuals dealing with cystic fibrosis by providing financial, emotional and educational support in their day to day battle with this unrelenting, incurable disease.
About Cystic Fibrosis
Cystic fibrosis (CF) is the most common fatal genetic disease in the US today. It affects about 30,000 children and young adults, and occurs in approximately one in every 2,000 live births. One in 25 Americans (more than 12 million people) is an unknowing, symptom-less carrier of the defective gene causing CF. If both parents carry the defective gene, there is a 25% chance that each child they have may have CF.
There are over 800 different genetic mutations causing cystic fibrosis. The most common mutations attack the lungs and digestive system. This results in frequent, severe lung infections, which eventually kill the lungs, as well as halting the production of pancreatic enzymes necessary for digestion and nutritional absorption.
Although there is no cure, genetic research has produced several medications that have found increasing success in treating the symptoms of the disease. These medications are very expensive, and must be taken every day together with enzyme supplements, antibiotics, special vitamin supplements and mucolytics. In addition, most young people with CF must do chest physiotherapy and inhalation therapy several times each day in order to maintain optimum health.