The Alpha-1 Foundation is excited to launch the first ever Virtual National Conference. In 2020, we have provided the entire Alpha-1 Community a new way to be a part of this annual event. For 29 years, Alphas have been able to attend this conference in person and access the latest education and research updates. Below is a testimonial from Dr. Gordon Cadwgan (ZZ) and his wife, Ruth about their experiences at this annual event.
WHY WE ATTEND ALPHA-1 NATIONAL CONFERENCES
1992! Our first national conference in Minneapolis. I was a newly diagnosed Alpha, who had just started infusion therapy, had read most of the meager information available and was eager to meet other alphas, learn more about this condition I had inherited from my parents and see if indeed this condition would lead to my imminent (5-10 years) death. By the end of that first conference, even as small as it was (40+ people?), we both knew this was going to be one of our primary sources of information, support, and friendship.
Information. Our national conferences are a goldmine of Alpha information. Everyone is there. Our pharma, specialty care medical companies and biotech researchers set up their booths and bring their top people to meet you and provide you with an inside look at their staff and products. Our Alpha lung and liver docs are there, giving seminars, offering advice, relating the newest research, talking to people one-on-one. Your Foundation staff (who organize and run the meeting) and Board present updates on the activities of the Foundation and tell you what you can do to help. These are just a sliver of all the info that is available. There is much, much more.
Support. One of the most important aspects of a national conference which you will feel immediately, is that we are all in this boat together. Some of us are OK while others are having difficulty and need support. Everyone is willing to share their experiences, offer advice and share. How great is it to meet your AlphaNet coordinator face-to-face! How much fun is it to meet with your own support group people and have lunch together to catch up and talk about the conference! There are always seminars on coping skills and ways to improve your quality of life.
Friendship. Alpha is a genetic condition and maybe that is why as you meet people you will begin to feel that you are family. The more you get involved with Alpha fundraisers, support groups and the Foundation itself the more friends you will make. The Alpha community is an amazing group of friendly, hard-working, and intelligent people all trying to make life better and find that cure,
Gordon and Ruth Cadwgan