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Alphas learn to live longer, be healthier, and help to find a cure for Alpha-1 at national Alpha-1 conference
SAN FRANCISCO—Alphas learned to live longer, be healthier, and help to fund a cure for Alpha-1 at the Alpha-1 Association’s 18th annual national education conference over the weekend.
The keynote speaker, Walter M. Bortz II, MD, of the Stanford University School of Medicine, talked about the secrets of living a long and healthy life.
Michael Krowka, MD, outlines the basics of Alpha-1
Bortz, 79, regularly runs 16 miles a week and has run 36 marathons including the 2008 New York Marathon.
The conference opened Friday afternoon with a presentation by the Alpha-1 Foundation’s Building Friends for a Cure program. A packed room heard volunteers from the “Friends” program talk about raising both funds for Alpha-1 research programs and awareness of Alpha-1 itself.
Michael Krowka, MD, of the Mayo Clinic in Rochester, MN, gave an overview of Alpha-1 Antitrypsin Deficiency especially for the 110 first-time attendees at the conference.
On Saturday, Foundation President & CEO John Walsh talked about “It’s Our Time in 2009,” including a brief history of Alpha-1 research, the Foundation’s plan for a new venture philanthropy research program in addition to current research efforts, and the “Million Dollar Match”—the opportunity to have donations for research doubled, up to a million dollars, through a matching grant from Talecris Biotherapeutics.
John Walsh tells why 2009 is a pivotal year for Alpha-1 research
Mark Brantly, MD, director of the Alpha-1 program at the University of Florida, talked about developments in clinical trials for Alpha-1 drug treatments, including potential gene therapies and an inhaled form of augmentation therapy.
Brian Tiep, MD, talked about the different kinds of supplementary medical oxygen systems available and the benefits of oxygen for those with lung disease.
Throughout the conference, Alphas were invited to tell their personal stories on video about how they came to be diagnosed with Alpha-1.
Laura Fleming of the Alpha-1 Foundation helps Tom Calvin record his video of how he came to be diagnosed with Alpha-1
The videos will be presented on the Foundation website and all participants were given a flash drive with a copy of their personal story on it and encouraged to “spread the word” about Alpha-1.
Afternoon breakout sessions included talks on treating respiratory infections, the importance of pulmonary rehabilitation, liver disease and transplant in both children and adults, liver research and the powerful link between recreational music making and wellness.
Sandy Singleton receives the Helen Chase Walsh Memorial Award from the Walsh family
Sunday’s highlights included a talk by Robert A. Sandhaus, MD, PhD, on “Myths and Realities in Alpha-1” and a panel on access to care and medical reimbursement led by Miriam O’Day.
Photos by Chris Hardy
