A CHARITY STARTED BY A SONG..... |
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Paul Mooney was a writer, poet, teacher and song writer. He also had cystic fibrosis. For most of his life, cystic fibrosis never determined what he could or could not do. He loved music, traveling, biking, hiking, teaching, family, friends and challenges.
A particularly virulent infection in 2005 led his doctors to advise Paul to consider lung transplantation as a way to extend his life. In October 2007, Paul received his new lungs. His recovery was slow and difficult, but by April 2008 he could feel the wonder of breathing deeply. Unfortunately, the feeling would not last and he was diagnosed with the very rare early onset Bronchiolitis Obliterans. After many rounds of treatments which devastated his kidneys, Paul passed away in December, 2009. |
For the last several years of his life, Paul was sustained by his on-line cystic fibrosis friends. He loved meeting and chatting with his "cysters" and "fibros" all over the world. He loved doing research to help when he could, to advise when he thought it appropriate, and to share with his virtual friends the unique experience of cystic fibrosis. Paul loved to play his guitar and write songs that he would share with his on-line friends. After his death, his brothers and musician friends in Chicago produced the CD Because of a Woman including his favorite creations. One of these songs is "Cystic Dreams", the inspiration for the name of this Fund. The first grants distributed came from the initial sales of Paul's CD. Today, proceeds received from CD sales, downloads and the streaming of Paul's songs still support this charity.
It was Paul's dream to establish a fund to help individuals and families who incur excessive expenses because of cystic fibrosis-related problems. He knew first hand how much stress money worries could create, and he knew that without the financial support of family and friends, transplantation would not have been an option for him. In spite of his own experience with organ rejection, Paul supported organ donation, and upon his death became a donor himself. In January of 2011, we received a medal of honor from the Gift of Life Donor Program thanking us for Paul's gift. Two people can see now, thanks to his generosity!
Paul's father, William Mooney, founded The Cystic Dreams Fund in memory of his son. Bill had a passion for raising money to help those in need, and his efforts helped countless individuals suffering from poverty, homelessness, addiction and disease. Although Bill is no longer with us, his years of experience in fundraising and his time of service on the Board of the Massachusetts Cystic Fibrosis Foundation molded and shaped our organization, while his wisdom and guidance propelled us forward.