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07/22/08: The Roney Family Talks About Hard Work and its Invaluable Rewards
Dear Friends:
Those of us who have worked with the CPF for years know that when patients (and often doctors) need information about Pulmonary Fibrosis, the CPF is the key national resource for that information. For that reason, every year, as fall approaches, my family unites to support them. Our personal losses to Pulmonary Fibrosis have not been minor - 7 members of the family have been claimed by this relentless disease and we don't want our current generation of family members - all 34 of us in total - to have to ever experience the pain we've experienced. It is our mission to eradicate this disease in our lifetime. When asked about how we have chosen to commit our time and energy to the CPF, we can easily answer that the organization has demonstrated that they are leading a national campaign to cure pulmonary fibrosis not only by funding emerging research, but also by providing services to the thousands of patients and families around the country that desperately need guidance. We feel the national community they have created will continue to drive new efforts in research, government advocacy, professional education, treatment information and patient services. Collectively, each of these efforts serves to sustain an incredible model of success in representing the IPF community and being a driving force to find a cure. In the fall the Roney family holds The Breathing is Glorious! (B.I.G.) event in Chicago, and the Butterfly Garden Party, held in Malibu, Calif. We are confident that this is the best way WE can help. The truth is that it takes much work for us to mount our events each year, but we are incredibly rewarded by seeing research funded and patients get much needed help, and we consider the event itself a highlight of our year. The long-term benefit is that we can be personally pleased that we have taken a major role in advancing the fight against the disease. Because we know the cost of running an organization like the CPF, we choose to direct our energies to fundraising. But there are also other important ways to support their efforts. We are aware that part of our task is to communicate information about the CPF to everyone we encounter so that we can build a bigger community of informed friends. Those friends can help us advocate in Washington D.C. for increased funding for Pulmonary Fibrosis research, they can attend an event, or most importantly, they can spread the word so that we have build national awareness of the disease and the threat it represents to our society. Whatever support path you might choose, you will find it to be a truly rewarding experience. Everything we do helps the CPF reach thousands of patients while supporting researchers in their commitment to finding a cure. My family will never cease to fight for answers and we are profoundly grateful to others who step forward to help. My best to you and yours, Roc Roney |



