I have been reflecting on the high cost of health care and on the extraordinary cost of health care for those persons with chronic illnesses like Mark. I am extremely grateful for those who are able to contribute to fund raisers like Mark’s because there are so many worthy causes where people can choose to do charitable giving.
The focus in my life now is on the reality of the miracle of Mark living with a pair of healthy lungs! When he was diagnosed in 1983 the emphasis was on giving him the best care possible to keep him healthy for as long as possible. At the time I tried to educate myself on the research taking place to find a cure for Cystic Fibrosis. Of course, no research takes place without funding. I am remembering Henry’s parents were consistent donors to the CF Foundation and my mom went door to door in her neighborhood to collect for CF. During the mid-nineties I decided to participate in some fund raising for CF research by getting a team together for the Great Strides walk. These walks were (and still are) held throughout the country each year in multiple locations. I gathered a group each year for five years with each team member asking their friends and family to sponsor them in the walk. I remember typing and copying a letter to mail out each year. No social media then! I had forgotten, but Mark reminded me he participated at least one year when he rollerbladed the route with his friend, Jesse! I doubt he will be inclined to rollerblade now, even though that is possible! However, he is working on getting a bicycle ready for when he is cleared to ride.
A few years ago research brought the drug, Orkambi, on the market which was going to be helpful to CF patients with Mark’s genetic mutation. However, once it was being prescribed it was discovered that patients with very low lung function did not do well with it and could have significant side effects. Mark did not benefit but many other patients did.
Again, there are many needs out there. There is much research to be continued for CF, cancer, heart disease and illnesses that have touched your family and friends. I so appreciate all those who are able to support Mark through COTA and who have supported CF research in the past, as well as the support of your prayers, good wishes, caring and kindness.

— Connie