• Aftermath of the COPD/Alpha1 Education Day
  • The PERF Board members are all volunteers and busy ones at that. October 2nd was a COPD/Alpha-1 Education Day, which they have been helping with for months. You saw the proposed schedule in our last newsletter. Its successful dawn-to-dusk completion came after 4 talks by Dr. Casaburi, 2 by Dr. Tiep and a short one each by Jim Barnett and Mary Burns. Rich and Mary (with the assistance of Brian Tiep) acted as moderators and timekeepers in the separate tracks for patients and health care professionals. Mary had hoped to take notes but was too busy with keeping time and other duties in the professional track she was monitoring for any meaningful notes on the 10 different lectures that were presented. That's right, ten! It was a busy day crammed with information from doctors volunteering their time and expertise. There were about 140 in the audience and there could easily have been 100 more, according to disappointed absentees. Well, the important thing was the enthusiastic response of all who were present. It helped make the day worthwhile for those of us there from dawn to dusk. Mary Burns gave a short explanation of the nuts and bolts of PERF, which we will repeat here.

  • All about PERF
  • The Foundation
  • "The Pulmonary Education & Research Foundation, PERF, was conceived, and largely financed, by Alvin Grancell. Alvin is the widower of one of my very special patients, Mary Grancell. He originally wanted a foundation focused narrowly on pulmonary rehabilitation programs. That scope widened very quickly. PERF is now associated with many national organizations as well as local ones such as CSPR, the California Society of Pulmonary Rehabilitation. We support all aspects of pulmonary rehabilitation. Our newsletter, The Second Wind, is read around the world. Our website is geared toward both patient and professional and updated weekly by our Webmaster, Dr. Janos Porszasz, a pulmonary scientist. 

  • Research Support
  • Very early in the game the PERF Board recognized that it was necessary to support research that contributed to the scientific basis for pulmonary rehabilitation. Specifically, clinical research; the type of research needed to improve and lengthen the lives of those with pulmonary disease in the short run. Many of you in the Southern California area in particular have benefited from this research that is just beginning to impact other parts of the country and world.

    Funded Studies

    • How many of you do pursed lip breathing? Do you know that an investigation of PLB was the first study funded by PERF way back around 1985? As most of you know, we showed that done correctly it can raise the oxygen level of the blood, while done incorrectly it lowers it. Some parts of the world still don't understand that. Back in 1989 we also had a small but important study showing that PLB helps those with restrictive disease. No one thought this was possible until one of my patients noticed this when practicing breathing techniques with one of the first oximeters in Southern California; donated to the rehab program by Alvin Grancell. We listen to patients and learn a lot from you! 
    • Do the benefits of high intensity exercise sound familiar to you? It doesn't to many pulmonary patients in the world. How about the benefits of lightweight portable oxygen and oxygen with exercise? Do you know that about 80% of folks on portable oxygen in the United States have E-cylinders? How about the benefits of oxygen on improving exercise in patients whose oxygen levels don't now qualify them for oxygen? Seed money from our small foundation has helped these studies. 

    While all patients with pulmonary disease have benefited from our work, those of you so close to us in Southern California have probably benefited the most. You have volunteered for our studies, and learned. Your patient groups have socialized with each other at Rallies and events like this, and learned. Quarterly and annual meetings involving PERF Board members have kept local rehab staffs on the front line of learning and utilizing new concepts long before they get published. 

  • The Pledge for Establishing the Chair of Rehabilitative Sciences
  • In order to insure a mission that would continue to grow and help pulmonary patients for many years to come, Alvin pledged his entire estate to fund the Alvin Grancell - Mary Burns Chair of Rehabilitative Sciences. This is the world's first endowed chair supporting a pulmonary rehabilitation scientist. What is a University Chair? It is created by a fund set aside for a specific purpose, in this case, pulmonary rehab. The interest from that fund is used to support a scientist in perpetuity since the body of the fund is never touched. About two million dollars is now about the minimum bequest required to accomplish this.

    Two years ago, the Chair was established in the Los Angeles Biomedical Research Institute at the Harbor-UCLA Medical Center with the pledge of future adequate funding. Dr. Richard Casaburi was the first designated holder of the Chair. 

    Rather than doing this posthumously, as is usually the case, Alvin has magnanimously provided enough funding so that this dream could be achieved during his lifetime. 

    On January 1 of 2005 Dr. Casaburi will resign as chief of pulmonary services at Harbor-UCLA and formally occupy the Alvin Grancell-Mary Burns Chair of Rehabilitative Sciences, the first Chair in the world devoted to pulmonary rehabilitation. This is a momentous occasion for all of us. 

  • The Need for Continuing Support
  • PERF is also blessed with a dedicated, savvy Board. We have made major accomplishments with small amounts of money, some of it donated by you. The Chair is established, but our goals remain ambitious as the needs of pulmonary patients around the world grow. When Rich Casaburi, or Tom Petty, make an annual appeal for funds next month, remember our history of accomplishment. Donate if you can, and send us your best wishes if you can't. Those good wishes also mean a lot, and inspire us to continue with our mission of helping those with pulmonary disease. Thanks to all of you."

  • PERF Fundraiser
  • The next day was equally important, but much more relaxed. The Board, and about 48 other guests, attended "an elegant afternoon of music" at the PERF fundraiser held in the West Covina home of Barbara and Harry Borak. Did you know that Dr. Brian Tiep IS a gifted musician able to play the violin, mandolin and almost any other stringed instrument with equal skill? Brian, his daughter Rebecca on the violin, and Gary Ibarra on the classical guitar, played together while 11-year-old Adam Alvarado, a future physician, played some elegant classical music on the piano. Brian and Rebecca later roamed the group, informally playing any requests. Their repertoire seemed unlimited! It reminded a few of us of all the times they had entertained us at past Rallies and CSPR meetings. Such multitalented people never cease to amaze those of us that aren't. 

  • Dr. Petty's New Assignment
  • Dr Petty wasn't able to join us at these functions but he is amazingly busy as he continues to improve after his 4th heart surgery. He is editing a new book on "Pulmonary Disorders of the Elderly (Diagnosis, Prevention and Treatment) which will be shown at the American College of Chest Physicians (AACP) in Seattle this month. 

    AARC, The American Association of Respiratory Care, has been getting a lot of questions and asked if Dr. Petty could help them out. He replied, with typical enthusiasm, that he loves doing this kind of thing! The debut of "Ask Dr. Tom" will coincide with the celebration of Respiratory Care Week, beginning Oct. 25. In the online column, he will be available to answer your questions about lung disease and care.

  • Do you have a question about respiratory disease that has been bothering you? If so, feel free to write and ask us, either through our web site or by mail. We answer all of your letters.