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Alpha-1 Foundation Inc

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Lung Diseases Research, Medical Research, Public Health

Mission: The Alpha-1 Foundation is a not-for-profit, voluntary health organization founded in 1995 by Sandy Lindsey, Susan Stanley, and John Walsh, all diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). Regrettably, Ms. Stanley and Ms. Lindsey have passed away as a result of their illness, however their vision for this vital organization remains and is joined by thousands of others: to provide the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1. Alpha-1 is one of the most common serious hereditary disorders in the US. Alpha-1 can result in liver and/or lung disease and can cause early death and disability in children and adults. Alpha-1 has been identified in virtually all populations. It is estimated that as many as 1 in every 2,500 Americans, or 100,000 people, may have the severe form of Alpha-1 and more than 20 million Americans are genetic carriers. The gene for Alpha-1 is passed on from generation to generation, in many cases unknowingly. There is no known cure for Alpha-1. At the time the Foundation was conceived, there was little research being conducted on Alpha-1, as is the case with many ?orphan disorders.? The National Institutes of Health (NIH), National Heart, Lung and Blood Institute (NHLBI), had just concluded its seven-year longitudinal study on Alpha-1 and dropped funding at its 37 Alpha-1 registry clinical centers. There was no organized effort by the public or private sector to fund and promote research on Alpha-1 and there were huge obstacles to overcome in stimulating research initiatives. Today, the Foundation has successfully overcome major impediments to pursuing improved treatments and a cure for Alpha-1. It has built the infrastructure necessary to significantly accelerate research on this lethal genetic disorder and has created a growing awareness of Alpha-1 within the NIH, the research community and the voluntary health sector. The Foundation has grown in national reputation with its participation in national advisory committees and coalitions and its active involvement with other national health and research organizations. (See Appendix A) The Foundation is governed by a 13-member Board of Directors, comprised of leaders from the Alpha, medical, professional and scientific communities. (See Appendix B) Thirteen full-time staff members carry out the day-to-day operations of the Foundation and more than 100 scientists, physicians and other professionals, and Alpha-1 patients volunteer their time and expertise through service on its Advisory Committees and Working Groups. Recognized for its good operating practices, accountability and responsible governance, the Foundation has received the National Health Council?s Full Compliance Certification and the Charity Seal from the Better Business Bureau?s Wise Giving Alliance. These are the highest accreditations attainable in the not-for-profit and voluntary health sectors. In fiscal 2004, the Foundation maintained administrative costs at 8.6% of revenue and fundraising costs at 8.7%.

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