educating healthcare professionals and advancing public policy for the Alpha-1 Community.” 
|
| Home |
| A1AA Donation Shoppe |
| Mission Statement |
| What is Alpha-1 |
| Need Help Now ! |
|
Informational Resources
|
| Alpha-1 Vets |
| Health Tips |
| FAQs |
| Caregivers |
| Membership |
| Management Team |
| Press Room |
| Feedback and Comment |
| Our Partners and Links |
| Alpha-1 Advocacy Summary |
|
in the Alpha Community  |
|
Simply click HERE provides AAT Deficiency Testing. This AAT Deficiency Testing is a COMPLETE CONFIDENCIAL TESTING SERVICE and WITHOUT COST TO YOU. Please read the detail at: AAT Deficiency Detection Center |
Management Team
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.
Rev. Bill Garrison, rbgarrison at alpha1advocacy.org, Rev. Bill Garrison is diagnosed with Alpha One Disease. He has served as a ambulance EMT for well over 20 years, currently in college working on a degree in Psychology. He has obtained a A.A. Degree in Divinity, a B.A. Degree in Religious Studies. Also, serve as a volunteer chaplain with various agencies and groups in Virginia and around the country. Rev. Bill and Renee Garrison have several children, and grandchildren. The familyh enjoy camping, fishing and bible study. He encourage all being afflicted with AIAD, not stop, but rather feel that you can still become very active in your life.
Willy Maxwell, , Wyoming wmaxwell at alpha1advocacy.org, Willy, who is an MZ, and his wife, who is an SZ, have three children. His son Gavin, a liver-affected SZ, showed symptoms at one year old and was diagnosed with Alpha-1 six months later. Willy looks forward to representing the liver aspect of Alpha-1 as a board member. Willy is a pastor and has worked in radio, college admissions, coaches football and lives on an organic farm raising goats and chickens.
G. Bryan Shelby, bshelby at alpha1advocacy.org, Bryan Shelby was diagnosed with Alpha-1 lung disease in July 2006. He had to retire from the restaurant business, which he had worked for 40 years, at that time. He is currently going through a Bi-lateral lung transplant evaluation at the University of Michigan Hospital in Ann Arbor Michigan. He volunteered with the Alpha 1 community and eventually joined the Alpha 1 Advocacy Alliance Board of directors.
Bryan is a Veteran of the Vietnam War serving in the United States Navy from 1968 until 1972. He attended Indiana University, University of San Francisco, and finally San Diego State. Bryan is an Eagle Scout and has been a Scout Master, Cub Scout Pack Master, Tiger Cub Coach, and a Den Father. He still volunteers with the Boy Scouts. Bryan also is a volunteer for the American Lung Association of Michigan and a member Port Huron Civic Theatre Board of Directors. He is also a member of the Blue Water Arts Council, Community Theatre Association of Michigan, and the American Association of Community Theatre. Bryan resides in Port Huron, Michigan with his son, a student at Central Michigan University.
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.
Telephone: 540-948-6777 or 1-866-FOR-A1AA (1-866-367-2122) Fax # 540-948-6763
Copyright © 2008 Alpha-1 Advocacy Alliance, All Rights Reserved
Home | Disclaimer | Privacy Policy