Farewell but not Goodbye

Farewell but not Goodbye
by Mary Burns, RN, BS
After 38 years the Pulmonary Education and Research Foundation (PERF) is closing its doors, or, in 501(c)(3) terminology, we are dissolving. Keep reading to learn our story. In 1976, I was allowed to establish one of the first outpatient pulmonary rehabilitation (PR) programs in the world. Mary Grancell, one of my first patients, suffered from advanced emphysema. Like many of my early patients, she made dramatic improvements and became very active in helping me to encourage others to enter this very new program.Sadly, in 1984 Mary died from a non-respiratory condition. Her husband, Alvin Grancell, decided to establish PERF in her honor. With PERF, he was sure we could spread the word about PR, and help others with chronic obstructive pulmonary disease (COPD) or fibrotic lung diseases to feel better, be more independent, and live longer. How? By supporting research to prove its value, he was sure he would make our PR program and PERF world famous.

Was this a grandiose idea? YES, it was! Did he really expect PERF to be more successful than the Lung Association? “YES!” he declared, again and again. Who was supposed to do the work of achieving this? “Why, you of course”, he confidently replied, nodding at me. I groaned at the realization of the work in front of me.

The State of the Art in 1976
But first, here is a little background. In 1976, emphysema was considered a death sentence. As bad as cancer. Today life expectancy has improved leaps and bounds compared with 1976. How did that happen? Medical dogma at the time held that a patient short-of-breath with emphysema should be instructed to sit down and rest. Today, the patient first is taught how to properly do pursed-lips breathing and, only then, how to gradually begin to exercise. Exercise? YES! Back in 1976, when I proudly told a doctor his bed-bound patient was now able to climb a flight of stairs, the physician angrily responded “You are killing my patient! Stop this immediately! Tell him to rest! NOT to exercise!” Does this help you understand what PERF was up against in planning to make PR not only acceptable, but world famous?

A New Paradigm
Did all physicians accept this dogma? Of course not. Dr. Richard Casaburi, now PERF President, realized that a carefully designed clinical trial of patients’ exercise capabilities, before and after a PR program, was necessary to prove the value of exercise training versus rest as a treatment. Every patient in our PR program enthusiastically volunteered to participate in this seminal research. The result? Dr. Casaburi completed his now famous research showing the physical improvement of patients who completed PR with exercise versus rest.

Other pulmonologists, such as PERF Directors Dr. Brian Tiep and Dr. Robert Chang, joined our struggle to help make PR the standard of care in California for those with respiratory disease. Internationally renowned Dr. Tom Petty (a past PERF President) proposed and designed an NIH-funded PR program. Dr. Petty joined our cause to help make PR the standard of care for respiratory patients in throughout the United States.

Word quickly spread, and medical experts came from all over the world to learn more about PR. Dr. Casaburi lectured at international conferences. I was invited to help start PR programs at all four points of the compass: Norway (north), Argentina (south), Japan (east), USA (west) and many places in between. It took the efforts of all of PERF’s board members, including my own, to carry the message far and wide. It was a wild ride, and such an honor. Oh, the stories I could tell! And Alvin had been correct! PERF and PR were now world famous. PR is now the global standard of care for respiratory patients.

So, patient outlook improved – check! But, mission accomplished? No! There is still so much to be done. Although PERF is closing its doors, we are keeping our spirit alive by passing the torch to the Lundquist Institute for Biomedical Innovation at Harbor-UCLA Medical Center, a501(c)(3) non-profit organization. As one door closes, another opens. As part of our dissolution, PERF will establish the Pulmonary and Exercise Research Fund at the Lundquist Institute, to help support education for future leaders in pulmonary medicine and support world-leading respiratory research; all with the aim of improving the lives of those for whom shortness-of-breath and exercise intolerance are cardinal symptoms.

Did Alvin achieve his dream? Amazingly, yes! It took years of hard work, but grateful patients, eager to help others as they had been helped, joined in. Without all their help, and enthusiasm, PERF might never have succeeded. PERF became both a patient-driven, and patent-centric, organization. Were all these achievements due only to PERF? Of course not. But, the Directors of PERF were among the leaders responsible. Over the years PERF contributed to…

  • Demonstrating that properly done pursed-lips breathing (PLB) can increase oxygen saturation of patients with obstructive or restrictive lung diseases, as well as in those with normal lung function, at various altitudes
  • Demonstrating that vigorous exercise training is capable of markedly improving exercise tolerance in many diseases and even in patients with severe lung disease
  • Establishing the Grancell/Burns Chair in the Rehabilitative Sciences
  • Expanding the understanding of the utility of oxygen therapy for COPD patients
  • Investigating new oxygen conservation strategies to improve the utility of ambulatory oxygen therapy
  • Evaluating new bronchodilator and anti-inflammatory drugs intended to improve lung function and exercise tolerance in COPD patients
  • Showing that an appetite stimulant was effective in increasing body weight in underweight COPD patients
  • Demonstrating that anabolic drugs can increase muscle size and strength in men with obstructive lung disease
  • Helping those who use supplemental oxygen to now be allowed on ships and planes or to access other activities that they were not previously allowed to enjoy
  • Helping spread pulmonary rehabilitation and the use of oxygen around the world
  • Supporting PERF Directors who have published over 800 research articles in the fields of pulmonary medicine and exercise sciences. Their research achievements can be found at the National Library of Medicine by following this link.
Remember PERF through support of the Lundquist Institute
Back in the 1300’s Geoffrey Chaucer wrote an epic, oft-quoted poem saying, “All good things must come to an end.” I do not agree. Stagnation is the enemy of growth. The dissolution of PERF is not the end. PERF has established the Pulmonary and Exercise Research Fund at the Lundquist Institute, ensuring the continuation of our 38 years of work. There are too many amazing projects still underway to list them all. Lundquist researchers are continuing our mission by conducting research to better understand the mechanisms by which PR contributes to extending the lives of pulmonary patients as well as to others suffering from exercise limitation and shortness of breath. This fund will support world-leading respiratory and exercise research at the Lundquist Institute and support the training of the next wave of researchers, since so much more needs to be done. While this is my last blog, it is not a farewell to our readers, nor to my support of the Pulmonary and Exercise Research Fund at the Lundquist. Long may it flourish and continue to help those suffering from respiratory and exercise limitations! We call on you to join us in ensuring that the work that PERF started continues on at the Lundquist. Please join us in honoring PERF’s vision, and that of all the enthusiastic patients over the years, by making a donation to the Pulmonary and Exercise Research Fund at the Lundquist Institute.Now, a little sadly I must admit, I say farewell. As always, it is with my best wishes for better health for each of you and for those you love.

Mary Burns, RN,BS

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