“I have never met an Alpha I didn’t like.” The words leap off the screen on Angela Town’s AlphaNet coordinator “welcome” page.
Long before Town knew anything about Alpha-1, she was an advocate for children with disabilities. In 1989, her daughter was diagnosed as a special needs child. After her initial shock, she learned all she could about her daughter’s condition and became a special education paraprofessional.
She first heard of Alpha-1 in 1997.
Her then-fiancé, Chris Town, worked in research and development at Bayer Healthcare. A co-worker invited him to join Team Alpha-1 in the annual “Escape to the Cape” bike trek sponsored the American Lung Association of Massachusetts. Bayer manufactured Prolastin, the only augmentation therapy drug available at the time, and sponsored Team Alpha-1, which used the bike trek to raise awareness of Alpha-1 and funds for research. Town accepted the invitation, and has been riding in the Escape to the Cape nearly every year since.
Later that year, Angela and Chris were married, and Angela continued her work in special education.
A few years afterward, she developed breathing problems. In 2002 she was diagnosed with asthma, bronchitis and possible heart issues. Her doctors sent her to pulmonary rehabilitation classes.
By this time, Chris had ridden in many bike treks and had friends in the Alpha-1 community, among them AlphaNet coordinators Fred Walsh and Mary Pierce. Pierce was the founder and captain of Team Alpha-1.
As his wife’s condition worsened, he began to wonder if, just maybe, she was an Alpha. “Her mother had recently passed away from emphysema, and her father was in the beginning stages.” He asked a colleague at Bayer to send him a test kit.
“YOU DON’T HAVE ALPHA-1”
Angela brought the test kit to her next doctor’s appointment. “The doctor took the kit, opened it and threw it away. He said, ‘You don’t have Alpha-1.’”
But her symptoms continued to worsen, and she changed doctors. “I had two bouts of pneumonia and an x-ray showed the beginnings of emphysema. My new doctor looked through my records and sent me for testing.”
Chris immediately contacted his Alpha friends. “I called Fred and Mary and asked them to give me some numbers to look for on the test results.”
Says Angela: “When the doctor came in with the test results, I just looked at Chris’ face, and I knew it was bad. I was diagnosed as a ZZ.”
She was devastated. Fortunately, Chris knew exactly who to call. “Fred Walsh and Mary Pierce were the first ones who spoke with me when I was diagnosed,” said Angela. “These contacts were very helpful to me in understanding the disease and my course of treatment.”
ADVOCATE IN A NEW JOB
She began augmentation therapy and continued her pulmonary rehab.
In 2011, Walsh found out that she was retiring from her work in special education. “Fred told Angela and I that she had a great telephone voice, a great personality on the phone, and he thought she would be a great coordinator,” said Chris. Just a few weeks later, she was hired. “
“My new work goes hand in hand with the work that I did with my daughter and in special education,” she says. “I was a strong advocate for my daughter. Now, I am an advocate for people with Alpha-1.”
Angela’s welcome message concludes, “I love talking to fellow Alphas because I think it is so uplifting… I constantly discover similarities between myself and the individuals I speak with — we all have families, friends and interesting stories to share.”