2005 Annual Report and Request for Support
By Richard Casaburi, Ph.D., M.D.
President of PERF

Pulmonary Education and Research Foundation

An International Organization

Board of Directors

Richard Casaburi, PhD, MD, President      Alvin Grancell Vice President     Mary Burns, RN, BS Executive Vice President     Jean Hughes, Treasurer      Barbara Borak
Brian L. Tiep, MD     Alvin Hughes     Peter D. Pettler, Esq. James Barnett, RCP, RRT     Janos Porszasz, MD, PhD    Vlady Rosenbaum, Ph.D.
Thomas L. Petty, MD,  Board of Directors Emeritus

November, 2006          

Annual Report and Request for Your Support

We hope this letter finds you well.  This is has been a busy year for the leadership of the Pulmonary Education and Research Foundation (PERF) and it is my pleasure to keep you up to date.

For its more than 20 years of existence, the main concern of this foundation has been to improve the lives of people suffering with chronic obstructive pulmonary disease (COPD).  In the early years, this was a lonely mission.  COPD was perceived of as a hopeless condition; no effective therapies were available and there was little hope of progress.  The founders of PERF recognized the value of pulmonary rehabilitation and worked to spread the word and to encourage advances in the scientific and clinical basis of COPD care.  Well, things have changed and COPD is well along on its way to becoming a household word.  We now recognize that progress is possible and, indeed, inevitable.  I’ve traveled around the country and around the world (over 150,000 air miles this year!) lecturing about COPD and found more and more enthusiasm and optimism among those treating this disease.

Best of all, for those of us interested in COPD research, the big studies aimed at addressing the fundamental questions are starting to be organized.   Our research laboratory, the Rehabilitation Clinical Trials Center, is absolutely overwhelmed with projects.  We really have no idea how to accommodate them all!  Yet all are so important; we just have to try.  The breakthrough has been getting the National Institutes of Health interested in COPD research.  Here are a few examples:

·        The National Institutes of Health has been persuaded to wake up from its long sleep and learn more about the benefits of oxygen therapy.  There really hasn’t been a major study on oxygen therapy in the United States since our own Dr. Tom Petty led the NOTT study 25 years ago.  I just returned from the first meeting of the LOTT (the Long-Term Oxygen Therapy Trial) study group.  Fifteen sites around the United States have joined forces to determine whether people with less severely reduced oxygen levels will benefit from oxygen therapy.  We’re embarked on a 6 year study of several thousand patients.  It’s good to be underway.

·        We’re trying to address one of the central mysteries of COPD.  Cigarette smoking is clearly the cause of the vast majority of COPD cases.  Yet only about 20-25% of lifelong smokers will develop the disease.  What protects the lucky 75-80% from the ill effects of smoking on lung tissue?  The suspicion is that it’s in our genes.  If we understood the genetic factors that protect the lucky ones from COPD, then we would know where to focus our efforts on new therapies.  More than a dozen sites around the US have gotten together to propose a study that would analyze the genetic makeup (in great detail) of thousands of smokers, half with COPD and half without.   We should know within a few months whether the National Institutes of Health will fund this important project.

·        Pulmonary rehabilitation remains close to our hearts.  Great strides have been made in demonstrating the value of this therapy.  Yet, despite almost universal agreement that pulmonary rehabilitation should be standard of care therapy for COPD, its availability (and funding) remains spotty.  A group of top rehabilitation researchers have gotten together to propose what we feel will be the ultimate rehabilitation study.  We know that rehabilitation improves the lives of COPD patients.  But does it result in longer lives?  A study to settle this question is forming up.  It will involve a 5 year study of many hundreds of COPD patients.  We’ve made initial contacts with the National Institutes of Health and are hoping for encouragement to submit a formal proposal.

·        The COPD Clinical Research Network, a group of 10 sites around the United States, is in its 4^th year of operation.  We are well underway with our major project that seeks to find a new strategy to prevent COPD-related acute illnesses.  By the time we are done, 1100 patients will have been studied; about 25% have been recruited so far.  Each patient participates for a year; the study should be completed in about two years.

     The pharmaceutical industry has gotten the message that COPD therapies are worth developing.  We are involved in large studies seeking to develop new drugs to treat COPD.  These range from new bronchodilators to new molecules to inhibit inflammation in the lungs (and elsewhere) to approaches that aim at regrowing lung tissue.  Most of these development programs are in early stages and, sadly, most will not be ready soon – but it is good to see the journey underway.

     The Rehabilitation Clinical Trials Center has had to expand its capabilities to meet the challenge of new studies.  We now have five study coordinators and currently have five visiting research fellows.  Add summer students, a crew of collaborating investigators and pulmonary fellows from the Harbor-UCLA program and it is quite a group.  Dr. Janos Porszasz, who does a wonderful job managing the laboratory, has his hands full!  We can remember the days when our 4000 square foot building was relatively empty.  It is now straining at the seams.

     PERF has recruited a new member to its Board of Directors.  Dr. Vlady Rozenbaum suffers from COPD.  But far from accepting his debility, he has taken action.  He is the driving force behind COPD-Alert, a support and advocacy group that informs and educates its readers.  Dr. Rozenbaum works very hard to keep us all up to date.   His special skill appears to be the ability to navigate the complex goings-on in the legislative and regulatory arena.  He has his finger on the pulse of the issues that affect the lives of COPD patients.  We are proud to have him on our team.

     Dr Tom Petty continues to accumulate awards from the grateful pulmonary community.  His latest is the Sepacor Award from the American Association of Respiratory Care (AARC) Foundation for leadership in promoting lung health and treating lung diseases.

    The “Essentials of Pulmonary Rehabilitation-A Do It Yourself Guide To Enjoying Life with Chronic Lung Disease” was first written by Dr. Petty, Dr. Tiep and Mary Burns in 1991.  Several revisions have taken place since, along with a translation into Spanish.  It is now more widely distributed than ever.  You can download it from many websites including that of PERF at www.perf2ndwind.org.  It is also being distributed by many organizations including NECA.

     Dr. Brian Tiep continues to find new ways to contribute to advances in COPD.  This May, Dr. Tiep received the Mary Burns Annual Award from the California Society for Pulmonary Rehabilitation (CSPR) for his lifelong contributions to pulmonary rehabilitation.  His latest foray is to determine the benefits of pulmonary rehabilitation in preparing COPD patients for surgery.  He has returned to the City of Hope in Duarte, California (where he worked in the 1980s) to study this issue with the wonderful group of lung surgeons at that institution.

     E-mails have been flying back and forth recently between Mary Burns and Brian Tiep.  Their old interests in breathing techniques have reawakened.  It seems likely that a new research project exploring the mechanisms of benefit of pursed lips breathing, and ways of teaching effective breathing techniques to patients will get underway soon.  Our Mary is well and active.  We all look forward to each edition of the now quarterly Second Wind newsletter.  Mary keeps close contact with pulmonary rehabilitation programs in the area as well as in other countries and is generous with her time in giving our visiting research fellows an exposure to this important science.

     Jim Barnett continues to have the most active and traveled patient support group in the nation!  He has become nationally active in his mission to improve reimbursement for lightweight portable oxygen for patients.  He lectures about this and other areas of importance to patients nationally and well as in California.

     Mary Burns recently brought us wonderful news of a large endowment that will come to PERF to support its mission in coming years.  Mary’s brother, Mr. Edmund Roth has provided in his trust for the Edmund Roth-Mary Burns Fund for Research.  This wonderful gift assures that PERF’s activities will go on for many years.  It joins the Alvin Grancell-Mary Burns Chair in the Rehabilitative Sciences as PERF’s most lasting contributions.

      As you likely know, PERF conducts only one annual appeal; this is the only time you will be solicited.  We ask for your support that will directly support our work in promoting research and education in the fields of rehabilitation and COPD science.  We can promise that your donations will be used efficiently.  All of the Board of Directors contribute their services.

     Your donations are fully tax deductible and will be gratefully acknowledged in writing.  We look forward to hearing from you.

    We wish you and yours the best for the holiday season and for a healthy 2007.

 

Sincerely,

Richard Casaburi, Ph.D., M.D.
President, Pulmonary Education and Research Foundation
Alvin Grancell/Mary Burns Chair in the Rehabilitative Sciences
Medical Director, Rehabilitation Clinical Trials Center
Harbor-UCLA Research and Education Institute