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Take your family to Disney, and raise their understanding of the family genes, at national Alpha-1 conference

The Alpha-1 Association is will host its 19th annual national education conference at the Hilton Walt Disney Resort in Orlando, FL, June 11-13.

More than 300 Alphas will join the largest annual gathering of Alphas in the country. The conference theme is “Unlocking the Family Genes: The Key to a Healthier Life,” focusing on the importance of family awareness.

The keynote speaker is John Mulvihill, MD, professor of pediatrics and head of the genetics section at the University of Oklahoma, who will discuss family awareness, testing for Alpha-1, and the best practices for newborn screening.

“Dr. Mulvihill is known internationally for his work in genetics,” said Cathey Horsak, director of community programs and outreach for the Association. “He has worked tirelessly with the state of Oklahoma to expand their newborn screening program, a topic of great interest to the parents of Alpha-1 children.”

The conference aims to encourage Alphas to be open about their diagnosis with their families. This will help to find the many Alphas who don’t know they have the condition; more than 90 percent of Alphas remain undiagnosed.

Friday afternoon, June 11, the Alpha-1 Foundation will present its Building Friends for a Cure program, Mark Brantly, MD, will give first-time attendees an overview of Alpha-1, and Cathey Horsak will lead a conference orientation. Dinner will follow the always-heavily-attended Town Hall Meeting.

Marlene Erven, Association executive director, will give the conference welcome Saturday. The keynote speech will be followed by a panel discussion on family awareness. John Walsh, president & CEO of the Alpha-1 Foundation, will give an update on the Foundation and current research. Miriam O’Day, senior director, public policy for the Association and Foundation, will give an update on health care reform.

Alphas will get a chance to “ask the Alpha docs” when Alpha-1 experts will join the group for lunch and answer questions.

Topics of the 12 afternoon breakout sessions will include talking to your children about Alpha-1; infectious diseases, the lung transplant allocation system; and pediatric liver disease research.
Sunday’s sessions include a memorial service and talks on Alpha-1 liver disease, the emotional impact of Alpha-1, and stem cell research.

Registration deadline is May 14. For more information, see National Education Conference .