the 2014 alpha-1 national education conference

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Alphas greet each other between sessions during the National Education Conference.

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Alpha-1 Foundation’s Cathey Horsak speaks during the National Education Conference.

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Alphas listen to Dr. James Stock speak during the National Education Conference.

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Alphas socialize at Club Alpha during the National Education Conference.

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Alpha-1 Foundation staff members celebrate the merger with the Alpha-1 Association.

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The Alpha-1 Foundation and the Alpha-1 Association celebrate their merger.

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Alpha-1 Foundation president and CEO John Walsh speaks during the Opening Celebration.

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Dr. Charlie Strange eats lunch with Alphas during the National Education Conference.

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JoAnne Brailey’s Hope Quilt raised $450.00 during the National Education Conference.

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Alpha-1 Association chairman Henry Moehring closes the National Education Conference.

A few months ago, I received a call from Maria Virginia Deliz, the communications specialist for the Alpha-1 Foundation, in Coral Gables, Florida. She needed a photographer for their 23rd Annual National Education Conference at the Overland Park Convention Center in Overland Park, Kansas on June 6-8, 2014 and my name had been recommended to her by another client.

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

Common symptoms of Alpha-1 lung disease include shortness of breath, chronic obstructive pulmonary disease (COPD), weight loss and wheezing. There is no cure for Alpha-1 and the only treatment available is a weekly IV infusion of the missing alpha1-antitrypsin protein. 

Augmentation therapy has been shown to reduce the rate of declining lung function, however it cannot restore lost lung function and 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 hepatitis A and B vaccinations, regular blood and liver tests and CT scans. Patients are also advised to avoid smoking, heavy air pollution 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. This year’s conference was historic because the Alpha-1 Association and the Alpha-1 Foundation merged together. The two groups have worked together to promote research, education and advocacy for nearly 20 years.

557 people from 44 states registered for the conference and 177 attended for the first time. Several speakers, including pulmonary specialists, professors of medicine, psychiatrists, genetic researchers, gastroenterologists, internists, exercise physiologists and pharmaceutical reps spoke about the latest medical trials, breakthroughs and treatments available to Alpha-1 patients.

-scott weaver

 

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