AlphaNet Mourns the Loss of Veteran Coordinator Doug Turley
It is with great sadness that we share the news that AlphaNet Coordinator Doug Turley passed away on November 22, 2022. Doug joined AlphaNet in December 2000 and dedicated nearly 22 years to serving the Alpha-1 community. Doug felt strongly about being there for newly diagnosed Alphas and providing them with the education and reassurance…
RFA Announcement: AlphaNet Canada Patient-Reported Outcomes (PRO) Grant
AlphaNet Canada is proud to announce a request for applications (RFA)** for the AlphaNet Canada Patient Reported Outcomes Grant in Alpha-1 Antitrypsin Deficiency Program (Program). The Program is aimed at promoting the development of validated patient-reported outcome (PRO) tools to improve clinical trial design in AATD. The Program supports development of PROs that will improve…
Connie Scheidt
Hello, my name is Connie Scheidt (pounced Shy’d) and I would like to introduce myself as your AlphaNet Coordinator. I live in Michigan and have 3 children and 3 grandchildren who are the love of my life. I was diagnosed with Alpha-1 Antitrypsin Deficiency in 2014. I am a ZZ Alpha and was glad I…
Jeannie Holder
Hello! My name is Jeannie Holder, and I would like to introduce myself as your AlphaNet Coordinator. I live in Chickamauga, GA, just across the city and state line of Chattanooga TN. I have two beautiful, talented daughters, who are both educators, a son-in-law, and three amazing grandsons. We are a baseball family and love…
AlphaNet Honors Ab Rees’ Legacy with $200,000 Donation to Alpha-1 Foundation for ‘Ab Rees Fast Track Awards’
In honor of the late Ab Rees’ extraordinary contributions to the Alpha-1 community, AlphaNet is proud to donate $200,000 to the Alpha-1 Foundation to support the Alpha-1 Biomarkers Consortium (A1BC) study and establish the “Ab Rees Fast Track Awards.” The A1BC grant, funded by the National Institutes of Health (NIH), was created to identify and…
David Jamieson
Hi, my name is David Jamieson, and I would like to introduce myself as your AlphaNet Coordinator. I live in Glendale, Arizona with my beautiful wife, Martha, and our two fur babies. I am a father to a blended family of four kids, a daughter, a son of my own, and two stepdaughters. I am…
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The Alpha-1 Community Mourns the Loss of Ab Rees
Updated: April 20, 2022 It is with great sadness that we share the news that Ab Rees passed away on April 14, 2022. Ab was a valuable member of the Alpha-1 community and was an active AlphaNet Board member. Ab’s contributions to the Alpha-1 community were innumerable. He joined the AlphaNet Board in 2003 and…
All I Need is the Air That I Breathe: Alpha-1 Breathing Techniques
Some days, the most important thing we can do is just breathe. At birth, our bodies naturally know how to breathe. Over time, whether it’s due to stress, health issues, weight changes, or lack of exercise, our natural way of breathing changes. How well we breathe on any given day can depend on several factors.
Understanding Your Genes
The following questions were submitted by members of the Alpha-1 community and were answered by Dr. Robert A. Sandhaus, MD, PhD, FCCP, AlphaNet Medical Director. If an individual has a genotype of ZZ, is the alpha-1 antitrypsin that escapes the liver able to protect the lungs at all since the protein is misfolded? The Z…
ZZ Rocks: Alpha Leads the Band
Guy Johnson first learned he was a ZZ Alpha just 5 years ago at the age of forty. Since then, he’s made some major life changes including moving his family from Virginia Beach, Virginia to Sioux Falls, South Dakota, breaking a 20-year smoking habit, and becoming the lead singer of the rock band Stones Throw.