Alpha-1 Advocacy Alliance - Management Team

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Simply click HERE Alpha One International Registry
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Alpha-1 Advocacy Alliance
Management Team
A1AA Medical Advisors Link

Board of Directors:

Ann Marie Benzinger, abenzinger at alpha1advocacy.org, Ann Marie Benzinger lives in Wolftown, VA at the foot of the Blue Ridge Mountains. She is the mother of four adult children, grandmother to five, and mom to every stray cat in the area. Diagnosed in 1995 with Alpha-1, she became involved in the email lists searching for information. After finding a few other Alphas were out there, she began linking with them for support and information. After receiving a successful single lung transplant at the Medical College of Virginia on August 5, 1997, she decided to go to college so she could achieve her life dream to teach and educate. After graduating from the University of Virginia in December of 2003 with a BA in English and a Masters in Teaching, she faced an even larger challenge- exposure to children with lots and lots of germs. This led Ann Marie to immerse herself in the Alpha-1 community as she helped form what has become the Alpha-1 Advocacy Alliance.

Ann Marie serves the Alliance by attending, representing and reporting on the action of FDA Blood Product Advisory Committee and Blood Safety Advisory Committee meetings, conferences related to Alpha-1 (including Medicare, Genetic Alliance, Flu Pandemic Planning, national and regional Alpha-1), program development and administration of the mission of the Alliance.

David W. Courtney, dcourtney at alpha1advocacy.org, was diagnosed with COPD at the age of 40, and subsequently identified as having Alpha-1 Antitrypsin Deficiency, the underlying cause of his COPD. He is a disabled veteran and is currently pursuing lung transplant through the Veterans Administration. David is a member of Bethel Baptist Church, Plainview, Texas and is their Baptist Men's Director.

He is the Vice President and Director of Public Relations for The Presumed Consent Foundation, Inc.(PCF) www.presumedconsent.org and a member of the Board of Directors for the Fair Allocations in Research Foundation (FAIR). He leads the West Texas Alpha-1 Self Support Group; is Chapter President of the Texas Panhandle Chapter, Transplant Recipients International Organization (TRIO); and a member of LifeGift Organ Donation Center's Vital Volunteer Group. David serves as a member of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) Public Policy Roundtable on Organ Donation. He has presented PCF's proposed policy of Presumed Consent to a meeting of the US Dep't of Health and Human Services, Advisory Committee on Organ Transplantation; and continues to campaign for Presumed Consent Policy, and Alpha-1 and Transplant Patient concerns in numerous patient advocacy, medical, legal, legislative and media forums.

Mary Fran Draisker, mdraisker at alpha1advocacy.org, , (a former Air Force Intelligence Officer), was diagnosed in 1971 (at age 39) when she went for a check up for shortness of breath. The X-ray showed bell shaped lungs and lowered diaphragm and the pulmonary function tests showed an FEV1 of 49%. Now, at age 64 and an FEV1 of 29%, she attributes her advanced age on good longevity genes (her Dad will be 92 June 29), well honed survival skills, and continued exercising. In March 2005 she was given the paperwork to go on disability and moved to Utah to be near her two granddaughters. She currently maintains the Alpha 2 Alpha web site (http://www.alpha2alpha.net) and typesets the Alpha1 Advocacy Alliance newsletter, The Register.

She met her first Alphas in person through the Phoenix support group (Alphazonies) where she was secretary and edited and typeset the newsletter. She was erroneously phenotyped as an MZ in 1998, because she had infused prolastin the day before the blood draw; but when retested six weeks later, her Plasma level was 4.5 micromoles/liter and she is most definitely a ZZ.

Carole Gibson, cgibson at alpha1advocacy.org, orginally diagnosed with COPD in her late thirties, went another six years, multiple doctors and many years of not smoking before she was properly diagnosed in 1999 with Alpha-1. Immediately she was put on oxygen and six months later left her clerical job for disability. Though her breathing function continued to rapidly decline, life improved because of proper medical attention and priceless internet support. In August 2003 Carole received the gift of life: a bi-lateral lung transplant at Methodist Hospital in Indianapolis.

Carole Gibson discovered the Alpha-1 internet community after going on disabilty and buying a computer. She enthusiastically became very involved with anything involving Alpha-1, developing two websites concerning Alpha-1; Alpha1 Network provides a chatroom and message board "communities.msn.com/Alpha1Network" and Alpha-1VOICE www.alpha1voice.org a web-based organization focusing on patient advocacy.

With over thirty years of work experience in the business field, Carole brings purchasing, accounting and general office skills to the board. Carole lives in Evansville, Indiana and enjoys sharing her home with a dog, two cats and since her transplant, she is once again able to maintain her house inside and outside, savoring every minute of every day with her second chance at life.

Carole is happiest when she can provide support and information to a newly-diagnosed Alpha or anyone with a lung illness.

Marcie Heitzman, heitzman at alpha1advocacy.org, hails from Pearland, Texas where she and her husband David enjoy life with their family of Bret, Foster, Julia, Catie (all MZ's) and their forever ZZ son, Hunter. Hunter was diagnosed at 2 months of age with Alpha-1 and in no time was listed for a liver transplant. After three agonizing weeks, Hunter received his transplant. Unfortunately, there were complications post transplant and they lost him on April 8, 2003. He was just 6 ½ months old.

Marcie and her family took their grief and began advocating for anyone affected by Alpha-1 through the establishment of the Hunter Lee Heitzman Endowment Fund at Baylor College of Medicine benefiting the Texas Children's Liver Center in Houston. Marcie would like to see mandatory newborn screening in every state, but of utmost importance is to educate the patient and medical community about Alpha-1. You can read her full story at www.huntersgift.org Marcie wants to make sure that every parent has the information they need if they too must face Alpha-1 for their children.

Carl Johnson, cjohnson at alpha1advocacy.org, was diagnosed with Alpha 1 January of 1993. He started Prolastin the next year in November of 1994. Maintained a fairly healthy life style until fall of 2003. January of 2004, he was lined up to return to Barnes hospital in St Louis, in April he and his sister relocated there to await his bilateral lung transplant, on June 12, 2004. Carl is very active with the T.O.S.A. (Tex Organ Sharing Alliance) and participates with Organ donor presentations.

He is also very active with a valley wide old car club. Classic car shows offer an opportunity to set up an Alpha-1 and Organ donor display on the hood of his car. He is a walking information booth for Alpha-1 and Organ sharing. Carl Johnson is a widower with a son that teaches 8th grade math at a local middle school, and a married daughter who is a project manager for a commercial interior design firm in Dallas. His son-in-law is an attorney in Dallas. They are the proud owners of two Great Danes.

Bill Poplett, bpoplett at alpha1advocacy.org, is a retired Chief Petty Officer with the U.S. Navy. He was diagnosed with Alpha-1 lung disease in 1986, and underwent a single lung transplant in February 2000. Bill has volunteered within the Alpha-1 community for over 20 years. He established the Alpha to Alpha website www.alpha2alpha.net and support system for the Alpha-1 community, and also assists in maintaining the Alpha-1 Lung e-mail support group with over 450+ members as well as assisting in the Liver e-mail support group. Bill currently volunteers with the American Lung Association of Virginia, LifeNet (an organ procurement organization) and is the Transplant Patient Representative on the Virginia Transplant Council. Bill resides in Virginia Beach, Virginia with his wife Betty. Their two daughters are married and Bill and Betty have two grandchildren.

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