Billions of dollars in devastating cuts to medical research are looming in the near future, prompting the Cystic Fibrosis Foundation (CFF) to ask Facebook users to “Take Action Now” by letting Congressional representatives know they want to protect programs important to people with Cystic Fibrosis (CF).

By clicking the link at hq-nu.salsalabs.com, Facebook users can be taken to the CFF website where a page opens to a prewritten letter titled “Protect NIH and FDA funding”. The letter details how the person signing wants the law requiring budget cuts to be revised in order to protect the CF testing that is funded by the National Institutes of Health and the Food and Drug Administration.

The user then types in their personal information as a way of signing the letter, presses submit and the CFF brings up options as to which representatives and senators the user would like to send their letter.

Boston University (BU) is 1 of 27 universities funded by the NIH and they are getting ready for sequestration to affect their research. Researchers at BU have been trying to grow lung cells in order to combat CF.

Additional research that may be affected by the sequestration is for the new drug, Kalydeco.

Kalydeco is a new oral medication used for the treatment of CF. It was approved by the FDA in January 2012. Additional studies that have been scheduled for Kalydeco in patient groups not evaluated in earlier studies of the drug, may be put on hold if funding is cut.

Since 1955, the CFF has been the driving force behind the pursuit of a cure.

CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, leads to life-threatening lung infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with CF lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond with the predicted median age of survival being in the late 30s.

Another way people with CF can be helped is for more individuals to sign up on the organ donor registry, allowing more CF victims on lung transplant lists to live.

Reina P. Cunningham can be reached at rpcunningham@civitasmedia.com or 606-248-1010, ext. 205.