In 1992 Susan Burroughs, an adult patient of Cystic Fibrosis (CF), recognized a need among CF patients to connect with other patients and families for information and support. With that in mind, she developed a newsletter called Reaching Out. For over 6 years Susan produced and distributed the newsletter on her own. During that time the distribution grew from a handful of subscribers to over 1,000 CF patients and families all over the United States.
During her own battle with CF, Susan began a tube-feeding regimen in 1998 to maintain her weight. It cost her family an additional $150 a month because her insurance did not cover liquid nutrition. While her family could make the necessary adjustments to their monthly budget, she realized that many CF families were compromising their children's health because they could not afford the additional financial burden. She also discovered that, since some CF patients take as many as 20 prescription drugs at a time, many patients were forfeiting medication because their families simply could not afford the mandatory co-payments.
For years Susan campaigned and raised money for the Cystic Fibrosis Foundation's research efforts to find the cure for CF. After watching many of her friends die because of the poor quality of life of during their illness, she realized there is much work to be done while waiting for a cure. This was the impetus for the Cystic Fibrosis-Reaching Out Foundation, Inc., an all-volunteer 501(c) 3 benevolent organization to help CF patients and families.
Cystic Fibrosis-Reaching Out Foundation, Inc. is sensitive to the needs of patients and families with Cystic Fibrosis and provides financial and educational resources to assist them.
Healthcare professionals and social workers familiar with the unique financial and social needs of CF families identify families that qualify for Cystic Fibrosis-Reaching Out Foundation support.
The Foundation provides emergency funds to families who must live away from home to be near their loved one during their hospitalization for CF related illnesses. These funds pay for such items as hotel, transportation, food and other quality of life concerns during times of crisis.
The Foundation provides funds to families who would otherwise lose health insurance due to employment changes or other events. The fund helps qualified families with medical co-pay payments, COBRA payments or other insurance premiums.
The Foundation provides funds to pay for prescribed nutritional supplements for Cystic Fibrosis patients. The ability to gain and maintain weight is a challenge to CF patients. Many must purchase special nutritional supplements and enzymes to achieve this goal and these supplements are often not covered by insurance.
Due to the high risk of infection many CF patients cannot attend support groups or educational sessions and feel disconnected from others during their illness. To address this need, The Foundation produces a quarterly newsletter to provide support and keep its readers abreast of research, treatments and current events relating to Cystic Fibrosis.
What CF Families are eligible to Receive Assistance?
Currently, the families that go to the Children's Healthcare of Atlanta: Egleston and Scottish Rite and Medical College of Georgia. As more funds are raised, additional CF Centers will be added.
The Cystic Fibrosis-Reaching Out Foundation is a non-profit Foundation under Section 501 (c) 3 of the Internal Revenue Code. Accordingly, the Foundation is not required to pay income taxes. Donors may deduct contributions to the Cystic Fibrosis-Reaching Out Foundation Inc, only to the extent that their contributions are gifts, with no consideration given.