the 2016 alpha-1 national education conference

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Julie MacNeil embraces her mother during the National Education Conference.

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Alphas greet each other during the National Education Conference.

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AlphaNet coordinator Diana Patterson greets Alphas during a Community Forum.

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AlphaNet coordinator Jesse Strickland greets Alphas during a Community Forum.

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Larry Angell speaks with community leaders during a Community Forum.

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Alphas meet AlphaNet coordinators and group leaders during a Community Forum.

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Alphas and drug company representatives take selfies during Club Alpha.

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Alpha-1 Foundation Chairman of the Board Gordon Cadwgan speaks during the closing ceremonies of the 2016 Alpha-1 National Education Conference.

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Alpha-1 Foundation President and CEO Henry R. Moehring speaks during the closing ceremonies of the 2016 Alpha-1 National Education Conference.

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Alphas party after the closing ceremonies of the National Education Conference.

I photographed the 25th annual Alpha-1 National Education Conference at the InterContinental Miami hotel in Miami, Florida on June 24-26, 2016.

Alpha-1 antitrypsin deficiency is a genetic condition in which the body does not make enough of a protein that protects the lungs and liver from severe damage. The condition can lead to emphysema and liver disease, often before age 40.

Symptoms of Alpha-1 lung disease include shortness of breath, chronic obstructive pulmonary disease (COPD) and wheezing. There is no cure for Alpha-1 and the only treatment is a weekly IV infusion of the missing alpha-1 antitrypsin protein.

Augmentation therapy has been shown to reduce the rate of declining lung function, however it is not a treatment for Alpha-1 liver disease.

Instead, health care practitioners concentrate on treating the symptoms of Alpha-1 liver disease by instructing patients to get regular blood and liver tests. Patients are also advised to avoid smoking and alcohol, as well as eating a balanced diet, exercising, and maintaining a healthy weight. If an Alpha-1 patient develops severe scarring of the liver (or cirrhosis), a liver transplant is usually their only option.

Despite the grim diagnosis of Alpha-1, the patients, the families, the physicians and the administrative staff at the conference were warm and outgoing people.

More than 600 people attended the conference. Several speakers, including pulmonary specialists, professors of medicine, genetic researchers, internists, gastroenterologists, physiologists and pharmaceutical reps spoke about the latest medical trials, breakthroughs and treatments available to Alpha-1 patients.

-scott weaver

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