Frequently Asked Questions
Q. What is the Alpha-1 Foundation?
A. The Alpha-1 Foundation is a Florida not-for-profit corporation founded in 1995 by three individuals diagnosed with Alpha-1 Antitrypsin (AAT) Deficiency.
Q. How is its mission being carried out?
A. The Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1. The Board of Directors has taken the leadership role in developing the infrastructure to promote research for the development of new therapies, to promote a standard of care for a higher quality of life for all Alphas, and, as the ultimate objective, to work toward finding a cure. Respected members of the medical and scientific communities have joined with Alphas in setting the direction for research on Alpha-1. Together, they are spearheading research initiatives and efforts, and are making a strong commitment to educating the public about this genetic disorder.
Q. Who are the members of the Board of Directors?
A. The Alpha-1 Foundation Board of Directors is a 15-member voluntary board, comprised of respected members of the Alpha, medical, professional and scientific communities from across the United States. The Board operates according to the Florida Statutes for Not-for-profit Corporations and under the guidelines of the Internal Revenue Service as a 501( c )(3) organization. As the governing body of the organization, it guides the strategic program direction and all activities of the organization. A majority of the Board membership is either diagnosed with Alpha-1, is a carrier, or has a diagnosed family member.
Q. Is the Alpha-1 Foundation a membership organization?
A. The Foundation does not have members who vote or pay dues, although representatives of the Alpha-1 Community actively participate in all committees, working groups and in other activities of the Foundation.
Q. How are Board members elected?
A. Board members are elected to three-year terms through a nomination process according to the corporation’s bylaws. Interested individuals are invited to nominate themselves to become candidates for Board membership, or are recommended by existing members of the Alpha-1 Foundation Board. The Budget, Programming and Nominating Committee of the Board of Directors reviews all applications, interviews each individual and establishes the slate for election by the Board. The nomination process takes into consideration a number of factors including the needs of the organization, the profile of the Board and the number of Board positions available for election. The bylaws mandate that a majority of the Board members be diagnosed Alphas, carriers or have a diagnosed family member.
Q. Who provides financial support to the Foundation?
A. The Alpha-1 Foundation relies on a variety of sources for funding. Revenues are generated through grants from foundations, contributions from corporations, proceeds from special events, private donations, bequests, and support from AlphaNet. Certain contributions and grants may be restricted to specific programs or designated for a particular portion of the operating expenses.
Q. How are the funds allocated?
A. The annual budget of the Foundation is reviewed by the Budget, Program and Nominating Committee of the Board of Directors and approved by the full Board. This approved budget becomes the guide for the expenditure of funds, with the exception of those that are restricted by grants or contributors. The Medical and Scientific Advisory Committee recommends and endorses all research related expenditures. The Foundation publishes its audited financial position in its annual report.
Q. What is AlphaNet?
A. AlphaNet was founded in the summer of 1995 by the same individuals who formed the Foundation. AlphaNet’s mission is to coordinate and consolidate low cost health services designed exclusively for individuals with Alpha-1, while generating a consistent source of revenue to support the efforts of the Foundation. AlphaNet is a 501( c )(3), Florida not-for-profit corporation and is governed by a Board of Directors independent of the Foundation.
Q. What is the relationship to the Alpha-1 Association?
A. In October 1994, the Association Board was approached regarding their participation in the establishment of a foundation and a direct service, revenue-generating program. At that time, the Association Board did not wish to participate, however they did not object to others undertaking this venture. Thus, the Alpha-1 Foundation and AlphaNet were formed separate from the Alpha-1 Association with distinct, yet complementary missions.
Q: How is the Alpha-1 Foundation different from the Alpha-1 Association?
A. Both the Alpha-1 Foundation and the Alpha-1 Association are not-for-profit corporations and provide valuable services to those affected by Alpha-1. However, they have distinctly different goals and are complementary rather than competitive. The Association’s focus is to identify those affected by Alpha-1 and to improve the quality of their lives through support, education and advocacy. The mission of the Alpha-1 Foundation is increased research, improved health, worldwide detection and a cure for Alpha-1; a major focus of the Foundation is promoting and funding research which will lead to new therapies and a cure.