|Birth of the Foundation|
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Three factors emerged in 2001 that made me feel the time was ‘right’:
The UNC group (Dr.’s Peadar Noone, Margaret Leigh, Aruna Sannuti, Michael Knowles, John Carson, Maimoona Zariwala, etc.) was instrumental in helping to identify PCD opinion leaders and researchers around the world. Because of their exceptional reputation for respiratory research, they brought immediate credibility to PCD as a topic for genetic investigation. They were very supportive of the idea of a patient group.
Armed with this support, I approached the newly created Vest Foundation and asked for some "seed" money to establish a patient group for PCD patients. They were very receptive to the idea and offered to sponsor the group until we could get up and running on our own. This allowed me to concentrate on organization goals instead of being bogged down in non-profit paperwork.
Testing the Waters
Enlisting the volunteer effort of some friends (Jane Braverman, PhD, and Meghan) we decided to see what sort of public reaction the PCD Foundation would receive by exhibiting at the American Thoracic Society (ATS) conference in Atlanta in 2002. We designed a graphic, borrowed a booth, and prepared some literature for distribution.
Around this time, PCD patient Lynn Ehrne contacted me after getting my name from UNC. I told her about the ATS meeting, and she told me about the e-group she moderated on Yahoo. I was developing the clinical contacts and she was instrumental in coordinating patient communication. It was clear that by combining efforts we could move things forward. Plus, Lynn was the group "cheerleader" who had absolute faith in our ability to succeed.
Lynn was excited about our ATS debut. I was excited, but also nervous. What if none of these physicians or researchers cared about PCD? What if they thought the patient population was too small to bother with? I wondered what would happen to our goals if crucial physician support were lacking. As it turned out, I needn’t have worried. The response was overwhelming! By the end of the event, we had 270 contacts from interested physicians and researchers in 13 countries. The general sentiment was "what took you so long?"
First Scientific Symposium
Clearly it was time to organize a scientific meeting focused on PCD. I contacted researchers, including Matthias Salathe from the University of Miami. In addition to his ciliary research, Dr. Salathe organizes an international group of researchers, The Mucus, Cilia, and Mucociliary Interaction Interest Group, which meets every two years. Dr. Salathe invited us to co-sponsor their upcoming meeting in November, 2002. With funding from The Vest Foundation, we had our first scientific symposium devoted to PCD.
The goal of most scientific meetings is to assess the current state of research and to develop priorities and strategies for future research. The Miami meeting allowed us to bring together the small international community of researchers who were collaborating with UNC in identifying PCD genetics. The efforts of this group were hampered by a shortage of funding and of "raw material" (patients with the disorder who could provide genetic samples). The need for more research on nasal nitric oxide measurements, a promising screening tool for PCD, was also discussed. Another problem identified and addressed in Miami was the difficulty in finding clinicians and pathologists willing to make the diagnosis, even when PCD is suspected.
From this information, we began to brainstorm the idea of a PCD treatment network, similar to the "Centers of Excellence" established by the CF community. The PCD network centers would be instrumental in developing standards of care for PCD and would serve as "diagnostic" centers for other physicians without access to the necessary resources. There is tremendous interest in this concept and it is still in development. As usual, the funding required to establish this network is currently not available, but we (PCD Foundation, UNC folks, etc) are diligently trying to find the funds.
First Family Day for Patients
So we had gauged PCD interest at ATS, convened interested parties in Miami, and developed a preliminary strategy for improving PCD care. Now we needed to get patient perspective and involvement. Several patients were already actively participating in PCD Foundation projects, but we wanted to encourage everyone to feel a sense of ownership in the foundation. We started with the first annual PCD Family Education Event (see article in newsletter #1) in Minneapolis. It was a wonderful chance to get to meet each other, share stories, and learn about PCD. The speakers also helped to graphically represent the frustration experienced by physicians at the lack of PCD treatment information available to them. The most stunning example of this was a slide presented by Dr. Dunitz of the University of Minnesota. The slide addressed the issue of existing evidence physicians can turn to when determining appropriate treatment for PCD patients. It was blank!