Organizations Filed Purposes:
THE MISSION OF THE ALPHA-1 ASSOCIATION IS TO IDENTIFY THOSE AFFECTED WITH ALPHA-1 ANTITRYPSIN DEFICIENCY AND TO IMPROVE THE QUALITY OF THEIR LIVES THROUGH SUPPORT, EDUCATION, AND ADVOCACY AND ENCOURAGE PARTICIPATION IN RESEARCH. THE MISSION IS ACCOMPLISHED WITH THE ASSISTANCE OF MORE THAN 745 VOLUNTEERS IN FISCAL YEAR 2014 FROM THE ALPHA-1 COMMUNITY. PROGRAMS AND SERVICES HAVE BEEN PROVIDED TO MORE THAN 5,000 ALPHA'S AND FAMILY MEMBERS AND THE ASSOCIATION HAS REACHED MORE THAN 10,000 ALPHA'S, FAMILY MEMBERS, HEALTHCARE PROFESSIONALS AND OTHERS THROUGH ITS PUBLICATIONS AND COMMUNICATION EFFORTS.
THE ALPHA-1 ASSOCIATION IS THE LEADING NATIONAL PATIENT MEMBERSHIP ORGANIZATION WHICH HAS SERVED THE ALPHA-1 PATIENT COMMUNITY SINCE 1991. IT'S PROGRAMS INCLUDE A NATIONAL SUPPORT NETWORK WHICH ENCOMPASSES MORE THAN 80 SUPPORT GROUPS, 4 VIRTUAL SUPPORT GROUPS, A PATIENT HOTLINE, ANNUAL NATIONAL EDUCATION CONFERENCE, REGIONAL EDUCATION DAY PROGRAMS, GENETIC COUNSELING SERVICE, AN ADVOCACY/PUBLIC POLICY PROGRAM AND A RESOURCE WEBSITE (WWW.ALPHA1.ORG)
THE ALPHA-1 ASSOCIATION'S 21ST ANNUAL NATIONAL EDUCATIONAL CONFERENCE, WAS HELD ON JUNE 6-8, 2014 IN KANSAS CITY, MO, WITH A TOTAL OF 511 ATTENDEES. THE SPEAKERS INCLUDED SOME OF THE LEADING CLINICIANS AND RESEARCHERS IN THE FIELD OF ALPHA-1 AS WELL AS OTHER HEALTH PROFESSIONALS. THE PROGRAM COVERED A WIDE RANGE OF MEDICAL EDUCATION TOPICS AND SUPPORTIVE TOPICS TO INFORM AND EMPOWER PATIENTS ABOUT THEIR HEALTH. THE CONFERENCE ALLOWED PATIENTS TO NETWORK WITH OTHER PATIENTS, BECOME MOTIVATED TO TAKE CHARGE OF THEIR HEALTH, PARTICIPATE IN LOCAL SUPPORT GROUPS, AWARENESS, OUTREACH, OR ADVOCACY PROGRAMS. THE LAST FIVE YEARS OF PRESENTATIONS ARE AVAILABLE ON THE ASSOCIATION WEBSITE AT WWW.ALPHA1.ORG.
PATIENT SUPPORT NETWORK - THE ALPHA-1 SUPPORT GROUP NETWORK ENCOMPASSES 80 SUPPORT GROUPS, FOUR VIRTUAL SUPPORT GROUPS, A PATIENT HOT LINE AND PEER GUIDE REFERRAL PROGRAM. SUPPORT GROUPS ARE COMMITTED TO IMPROVING THE QUALITY OF LIFE INDIVIDUALS AND THEIR FAMILIES AFFECTED BY ALPHA-1. THE FOUR VIRTUAL SUPPORT GROUPS INCLUDE THE ALPHA-1 FAMILIES, TRANSPLANT, CAREGIVERS, AND ALPHA-1 TIMELY TOPICS. IN ADDITION, MONTHLY TELECALLS ARE HELD FOR SUPPORT GROUP LEADERS TO PROVIDE ONGOING COMMUNICATION AND EDUCATION.
NATIONAL EDUCATION SERIES - THIS SERIES OF SEVEN (7) ONE-DAY REGIONAL PATIENT EDUCATIONAL PROGRAMS THAT HAS BEEN CONDUCTED SINCE 1999. THE SERIES PROVIDES ACCESS TO CURRENT MEDICAL INFORMATION AND RESOURCES TO HUNDREDS OF ALPHAS, THEIR FAMILIES, AND CAREGIVERS. THIS PAST SERIES BROUGHT IN A TOTAL OF 727 ATTENDEES. THERE IS NO COST TO THE PARTICIPANTS OTHER THAN THEIR OWN PERSONAL TRAVEL EXPENSES. IN MANY CASES THESE PROGRAMS ARE PLANNED IN CONJUNCTION WITH ALPHA-1 FOUNDATION-AFFILIATED CLINICAL RESOURCE CENTERS. A DINNER OR EVENT IS HELD IN CONJUNCTION WITH EACH DAY TO PROVIDE ALPHAS AND THEIR FAMILIES AN OPPORTUNITY TO INTERACT WITH OTHER PATIENTS, SPEAKERS, AND EXHIBITORS. CONTINUING EDUCATION CREDITS ARE OFFERED TO RESPIRATORY THERAPISTS AND GENETIC COUNSELORS WHO ATTEND THESE PROGRAMS. PRESENTATIONS FROM THIS SERIES ARE MOUNTED ON THE ASSOCIATION'S WEBSITE E-EDUCATION SITE FOR VIEWING AT WWW.ALPHA1.ORG.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Marlene S Erven | EXECUTIVE DIRECTOR | 40 | $106,155 |
| Virginia Clark | DIRECTOR | 2 | $0 |
| Karen Voss | DIRECTOR | 2 | $0 |
| Dc Young | DIRECTOR | 2 | $0 |
| Jennifer Jopp | DIRECTOR | 2 | $0 |
| Sandra Douglas | TREASURER | 5 | $0 |
| Thomas Corron | DIRECTOR | 2 | $0 |
| Dell Witcher | SECRETARY | 2 | $0 |
| Henry Moehring | CHAIR | 5 | $0 |
| Jen Childress | VICE CHAIR | 5 | $0 |
| Kenneth Benson | PAST CHAIR | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/201530649349300313_public.xml