Thursday, July 19, 2007

Alpha-1 Association Annual Conference

My dh and I were given the marvelous chance to attend the national conference in Alexandria, VA in early June 2007. The conference program was entitled "Mind & Body: Control Your Own Destiny" and it was a wonderful experience. A huge thank you to the organizations that provided the travel & grant money so we could attend.

The Alpha-1 Association is a member-based, nonprofit organization founded in 1991 to identify those affected by Alpha-1 Antitrypsin Deficiency and to improve the quality of their lives through support, education, advocacy, and research. This was their 16th annual conference and I would have to say that I believe they are fulfilling their mission statement. If you are curious about this organization, please check out their website: - you won't be disappointed.

The Alpha-1 Foundation is a not-for-profit organization founded in 1995 by three Alphas. The foundation is dedicated to providing leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. I donate to the Foundation through my employer's donation program - in honor of my dh. Their website can be found at . There are many ways to become involved with this organization.

Now back to the conference! This three day conference was packed with information but mostly there were hundreds of kind, caring individuals who all have one thing in common - in one form or another - Alpha-1. We met Alphas who were diagnosed but asymptomatic; Alphas on oxygen; Alphas who worked for pharmaceutical companies; parents of kids with Alpha-1; Alphas who had had lung transplants; and medical professionals who are researching ways to cure this genetic disorder.

As a caregiver, we are in a group of own; however, the Alpha community knows and acknowledges how absolutely vital we are to the survival of our personal Alpha (in this case, my dh). In fact, there is a current research project that studies how caregivers impact the health of the Alpha-1 (spouse, child, parent).

The final item I would like to add to today's post is: if you or anyone you know has been diagnosed with COPD or asthma; please suggest to them or to your doctor that a blood test for Alpha-1 Antitrypsin Deficiency be performed. It is inexpensive and easy.

You or your healthcare provider may obtain an Alpha-1 Test Kit (finger stick) from the Alpha-1 Research Registry by calling toll-free (877) 886-2383. You can perform the test yourself and submit the sample directly to the Registry at the Medical University of South Carolina.

Hiding your head in the sand isn't going to make Alpha-1 go away or get better. But if you are accurately diagnosed then proper treatment can be started AND you can change your lifestyle to help your lung health.

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