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"Alpha-1 -- Yesterday, Today and Tomorrow" is theme at Alpha-1 Association's 20th annual education conference
ST. PAUL, MN — Sandy Sandhaus, one of just two people who has attended all 20 of the national education conferences of the Alpha-1 Association, reviewed the past two decades and made a few predictions for the future at the 20th national education conference last weekend.
Sandy, also known as Robert A. Sandhaus, MD, PhD, clinical director of the Alpha-1 Foundation, executive vice president of AlphaNet and a professor of medicine at National Jewish Health, gave Saturday’s keynote speech, “Alpha-1 — Yesterday, Today and Tomorrow.”
Robert A. Sandhaus, MD, PhD, talks about Alpha-1
Some of his “Tomorrow” predictions were particularly interesting:
- 2016, Lung transplant survival dramatically improved
- 2017, Worldwide screening available for Alpha-1
- 2020, Alpha-1 Antitrypsin Deficiency “now considered a benign condition”
Immediately afterward, Sandhaus did double duty with the update on the Alpha-1 Foundation and current research, filling in for Foundation President & CEO John Walsh, who had to stay at home with a lung infection.
(For those who are wondering, Alpha Joe Reidy, a member of the Foundaton board, is the other person to attend every conference to date.)
Sixteen people were honored for being among those attending the first national conference in Minneapolis, MN, 20 years ago: Jill Aicher, Sandy Brandley, Greg Hules, Margie Kirchner, Lois Kirchner, Marvin Kirchner, Sally Larson, Marianne Mullen, Mary Pierce, Todd Pierce, Joe Reidy, Sandhaus, Julie Swanson, Estelle Tenant, Patrick Tenant and Jerry Treichel.
Jeffrey Teckman, MD, followed with a talk on adult Alpha-1 liver disease, making the point that Alphas are at higher risk of liver disease as they live longer, and they should have a relationship with a doctor who is knowledgeable about the liver and Alpha-1.
Jeffrey Teckman, MD, discusses adult liver disease in Alpha-1
Alphas had two formal opportunities to interact with Alpha-1 clinicians and researchers. An “Ask the Experts” session before lunch featured specialists from across the county sitting at individual tables where anyone could go to ask questions.
Afternoon breakout sessions included many of the same experts giving presentations. Topics included the latest research in Alpha-1 liver disease, nutrition, a panel for caregivers, complementary therapies for lung disease, and traveling with oxygen.
Ken Benson, chair of the Alpha-1 Association board, greets everyone to Friday’s awards ceremony
The Alpha-1 Foundation Research Registry allowed Alphas and Alpha-1 carriers to register online at the conference for the first time. Besides registering 13 people online, the Registry staff gave out all its paper registration forms, had to borrow more from the Foundation booth, and expects to receive dozens of them in the mail. The confidential Registry makes it easy to volunteer for new research efforts as they become available.
On Sunday, Stephen Cassivi, MD, of the Mayo Clinic talked about regenerative research and the possibility of one day regrowing damaged lung or liver tissue.
An audience member asks a question during Saturday afternoon’s breakout sessions.
Miriam O’Day, senior director of public policy for the Alpha-1 Foundation and Association, discussed current and forthcoming health insurance changes under the Affordable Care Act.
As always, Joe Reidy and Fred Walsh led the Sunday morning memorial ceremony for Alphas who passed away during the past year.
