American Association of Kidney Patients, Inc.
14440 Bruce B. Downs Blvd.
Tampa FL 33613
Mission
AAKP is a national patient organization dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities.
Leadership
CEO/Executive Director Gary Green
Board Chair Paul T. Conway
Board Chair Affiliation Board Member
General Info
Tax Exempt Status Public Supported Charity
Incorporation Year 1973
State Charitable Solicitations Permit Yes Mar 2018
State Registration Yes Mar 2017
Financial Summary
 
 
Projected Revenue $844,720.00
Projected Expenses $804,600.00
IRS Letter of Determination
AAKP 501C(3) LETTERView
Other Documents
Florida Kidney Stats & FactsView
Impact Statement
  • More than 180 visits to Congressional leaders bringing awareness of kidney disease to those who make legislative decision for kidney patients
  • Relaunch of the AAKP National Patient Meeting
  • Development of the second edition of the AAKP Delicious cookbook  – which addressed a long-needed request from patients since diet/nutrition is a major issue for those with kidney disease
  • Collaboration with kidney patient organizations and health care professional groups for the revamp of the AAKP National Patient Meeting
  • Creation of the Global Needs Survey to help AAKP better understand its constituents (demographics, geographic, needs)
  • Increase in public policy efforts in Washington, DC
AAKP has stayed true to the patient voice and is well respected in the renal community and by policy makers for not compromising its core mission which is provide an opportunity for a productive life for all people living with kidney disease.
Needs Statement
1. Increase operating funds
2. Diversify funding sources (donors, corporate funders, foundation grants, etc.)
3. Increase awareness of Organization through a nationally implemented marketing plan (measured by an increase in members and funding support)
4. Increase staff in order to effectively and efficiently meet the Organization’s needs
5. Secure Public Policy lobbyist based in DC to assist Organization stay on top of advocacy issues
Background Statement
The AAKP is the oldest fully independent kidney patient organization in America. For more than 45 years, AAKP has been the leader in the fields of patient engagement, patient-centered education and public advocacy efforts. AAKP is proud of our legacy and we consider ourselves among the original pioneers of increased access to high quality care for kidney patients. One of our earliest advocacy achievements is a well-known Federal program, familiar across America and within the United States Congress, the End Stage Renal Disease Program administered by the Centers for Medicare and Medicaid Services.  
 

AAKP is governed, by original design and intent, by a patient-majority National Board of Directors. AAKP was founded in 1969 by six kidney patients who were brought together by their disease, the shared prospect of a premature death and an intense desire to undergo and expand the availability of the still experimental and highly risky process of dialysis. They set out to inform fellow patients and the public about the devastating impact of kidney disease for both patients and the families that depended upon them

At the start, these AAKP volunteers – and their compassionate care teams - knew their actions and early engagement would impact not only their own lives, but the lives of patients who they might never meet in the years and decades ahead. However, they also knew that self-less activism alone - absent a national strategy and the combined strength of powerful allies and sophisticated advocacy techniques – would not result in the national changes in treatment access and quality they sought for all kidney patients.

They developed and refined their strategy as they moved forward and targeted specific Federal laws and regulations that posed either barriers or potential opportunities to best address the needs of kidney patients. These early AAKP patient advocates demonstrated courage and leadership as they publicly told their personal stories, sought out empathetic allies in academia, among medical professionals, visionaries in the pharmaceutical industry, early leaders in the provider community, and among elected and appointed leaders throughout government.

After several years of non-partisan advocacy, a bi-partisan majority of the US Congress passed the 1972 Amendments to the Social Security Act. According to the official history of the U.S. Social Security Administration, the 1972 legislative amendments extended health insurance coverage to people who had Chronic Kidney Disease and required dialysis or kidney transplantation services. President Richard M. Nixon signed this bi-partisan measure in 1973 and Federally-covered dialysis treatment and transplantation services for kidney patients began that same year.

 
Areas Served
Areas Served
Area
Throughout the United States
FL
Areas Served Comments The American Association of Kidney Patients is a national organization and serves the U.S.
Service Categories
Primary Org Type Diseases Disorders & Medical Disciplines
Secondary Org Type Education
Tertiary Org Type Health Care
Statement from the Board Chair/Board President
This year the American Association of Kidney Patients (AAKP) is moving forward to make our patient education materials accessible to more kidney patients, increase our advocacy activities for legislation to improve the quality of life of kidney patients, increase our support of local Kidney patient support groups, and strengthen our Board of Directors. To accomplish this, we are transitioning to free membership for patients and their families, have doubled our patient visits to congressional offices to encourage sponsorship and favorable votes on issues of interest to kidney patients, and are adding a number of new Board members with specific backgrounds to support our new Executive director in implementing our initiatives on behalf of kidney patients.

 

Continuing to grow funding for our activities in support of kidney patients through donations and grants has been more difficult as a result of more restrictive regulations on corporate grants established a few years ago. This has increased our reliance on the generosity of individual donors who share our passion for improving the quality of life for patients in all stages of kidney disease. We are increasing our focus on raising the awareness of potential individual donors who share this passion.

 I became exposed to the AAKP patient educational materials when I found out my kidneys were failing in 1995. They helped me understand my options, calmed my fears about my future, and gave me confidence that I had not lost the potential to live a very full life even when I needed dialysis or was fortunate enough to receive a transplant. I have since been on dialysis for almost 4 years, received a transplant which lasted 12 years, went back on dialysis and 2 years ago received a second transplant.  For the over 16 years since my kidney disease diagnosis, I have been able to continue work, travel and visits with my grandchildren.  Impressed by the valuable work of AAKP in kidney patient education and advocacy, I joined the AAKP Board of Directors in 2004 in order to give back and help AAKP continue its work in support of people like me.  I worked on a number of Board committees before being elected Board President in 2012. AAKP helped me to understand my disease, play an active role in my treatment, and to resist allowing my disease define me and deprive me of many of the joys of life.

Statement from the CEO/Executive Director

Programs
Description
HealthLine
HealthLine is currently a webinar-based program (with the conference call option still available for those without a computer) that conveniently educates patients and their family members on a variety of important health care topics from the comfort of their home or office. HealthLine addresses many issues patients with kidney disease face such as diet/nutrition, mention/social/emotional health, medication management, renal replacement treatment options, and co-morbid conditions kidney patients cope with such as hyperparathyroidism, bone disease, anemia, heart disease, and many more.
Budget $50,000
Category Diseases, Disorders & Medical Disciplines, General/Other Kidney Diseases
Program Linked to Organizational Strategy Yes
Population Served US& International Other Health/Disability
Short Term Success

·        First program of its kind for kidney patients

·        Since 2007, has educated more than 5,000 patients

·        Cost-effective program to implement/execute

·        Due to the nature of the program being in webinar format, it is easy to record and archive on AAKP website for continued education for those patients who were unable to participate in the live program

·        Since its inception in 2007, AAKP has more than $150,000 in grant funding toward this program

Long Term Success
All HealthLine programs are recorded and archived on the AAKP website for sustainability and continued patient education. Each HealthLine webinar attracts approximately 200-300 participants and since the first program in 2006, AAKP has educated more than 5,000 individuals via its HealthLine program.

 

Based on AAKP collected data from its Global Needs Assessment Survey, 53% of respondents prefer to receive their education through some form of online/web-based educational tool (e.g.; videos, webinars, teleconferences, podcasts, blogs, and emails). This further validates AAKP’s creation of this popular program.

Program Success Monitoring

AAKP Director of Programs and Services

 

Program Success Examples

·        Since 2007, has educated more than 5,000 patients

·        Approx. 200-300 participants per program

·        Survey Data:

o  80.4% of participants rate the quality of HealthLine as excellent or very good

o  91.6% of participants would recommend HealthLine to a family member, friend, caregiver or health care professional

o  On average, 42% of U.S. states are represented on each HealthLine program (i.e. – this percentage proves that AAKP is reaching nearly all patients across the U.S.).

o  55.5% of participants are kidney patients, meaning AAKP is successfully reaching its targeted population

o  80.5% of participants indicated that by participating in a HealthLine program, they gained more knowledge about the program topic than they originally had

CEO/Executive Director
CEO/Executive Director Gary Green
CEO Term Start July 2013
CEO/Executive Director Email ggreen@aakp.org
Former CEOs/Executive Directors
NameTerm
Kim A Buettner Sept 2008 - July 2010
Karen Ryals Aug 2010 - Feb 2013
Senior Staff
NameTitle
Diana Clynes Director of Programs
Staff & Volunteer Statistics
Full Time Staff 4
Part Time Staff 1
Staff Retention Rate % 90
Professional Development Yes
Contractors 2
Volunteers 25
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation Yes
Senior Management Formal Evaluation Yes
Non-Management Formal Evaluation Yes
Collaborations

AAKP collaborates with other non-profit organizations, businesses and corporate partners, foundations and public funders. This includes the Renal Physicians Association, American Society of Nephrologists, National Kidney Foundation, Renal Support Network, Dialysis Patient Citizens, American Kidney Fund, American Heart Association, American Diabetes Association, American Dietetic Association, Fresenius Medical Care-North America, DaVita Inc., Dialysis Clinic Inc., Baxter Healthcare, B. Braun Medical, AbbVie Pharmaceuticals, Florida Medical Quality Assurance, Inc., End-Stage Renal Disease Network, Amgen Inc., Shire Pharmaceutical, Genzyme, Astellas Pharmaceuticals, NxStage, Polycystic  Kidney Disease Foundation, National Institute of Health, Nephrology News & Issues, Nephrology Times, and the Food and Drug Administration.

 

External Assessments and Accreditations
Assessment/AccreditationYear
Risk Management Provisions
Commercial General Liability and D and O and Umbrella or Excess and Automobile and Professional
Workers Compensation and Employers' Liability
Government Licenses
Organization Licensed by the Government No
Plans
Fundraising Plan No
Communication Plan No
Strategic Plan No
Strategic Plan Years 3
Strategic Plan Adopted July 2012
Management Succession Plan No
Continuity of Operations Plan No
Policies
Nondiscrimination Policy Yes
Whistle Blower Policy Yes
Document Destruction Policy No
Directors and Officers Insurance Policy No
Policies and Procedures Yes
Comments
Management Comments by Organization


Other Documents
Other Document 2
AAKP Whistleblower
Board Chair
Board Chair Paul T. Conway
Company Affiliation Board Member
Board Term Sept 2014 to Sept 2016
Board Chair Email paulconway@cox.net
Board Members
Board Members
NameAffiliation
Daniel L Abel Board Member
Teri Browne PhDBoard Member
Paul T Conway Community Volunteer
Dr Tejas Desai Board Member
Dr. Louis H. Diamond Quality Health Care
Lisa Garner Indepent Living
Theodore Gee Jr.Lean Leaders
Dr Richard Goldman Nephrologist and Community Volunteer
Dr. Raymond M. Hakim Vanderbilt University School of Medicine
Brian Hess Patient Advocate
Jenny Kitsen Patient Advocate
Richard Knight Community Volunteer
Tanya Langford JDUniversity of Tampa
Dr Robert B Miller Board Member
Sam Pederson Community Volunteer
Gigi Politoski Patient Advocate
Suzanne Ruff Patient Advocate
Lana Schmidt Patient Advocate
Scott Toner Board Member
Linda S Tyler Board Member
Linda Umbach Board Member
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 3
Asian American/Pacific Islander 1
Caucasian 16
Hispanic/Latino 0
Native American/American Indian 0
Other 0 1 India
Board Gender
Male 11
Female 9
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 3
Board Orientation Yes
Number of Full Board Meetings Annually 4
Board Meeting Attendance % 82
Board Self-Evaluation No
Written Board Selection Criteria No
Board Conflict of Interest Policy Yes
% of Board Making Monetary Contributions 66
% of Board Making In-Kind Contributions 100
Standing Committees
Executive
Program / Program Planning
Finance
Nominating
Program / Program Planning
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
Legislative
Communications / Promotion / Publicity / Public Relations
Fiscal Year Projections
Fiscal Year Begins 2015
Fiscal Year Ends 2016
Projected Revenue $844,720.00
Projected Expenses $804,600.00
Organization has Endowment No
Endowment Spending Policy N/A
Capital Campaign
Currently In a Capital Campaign No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
Historical Financial Review
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201620152014
Foundation and
Corporation Contributions
$0$0$0
Government Contributions$0$0$0
Federal$0$0$0
State$0$0$0
Local$0$0$0
Unspecified$0$0$0
Individual Contributions$481,627$452,419$584,793
$0$8,965$8,707
$270,268$138,386$42,853
Investment Income, Net of Losses$0$59$455
Membership Dues$8,580$8,205$6,680
Special Events$28,028$52,543$57,161
Revenue In-Kind$6,119$13,767$9,263
Other$4,799$2,615$9,939
Expense Allocation
Fiscal Year201620152014
Program Expense$594,649$531,887$501,711
Administration Expense$160,944$163,088$165,830
Fundraising Expense$27,642$42,408$32,868
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses1.010.901.01
Program Expense/Total Expenses76%72%72%
Fundraising Expense/Contributed Revenue5%8%5%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$296,261$176,449$493,360
Current Assets$292,686$175,468$484,802
Long-Term Liabilities$0$0$18,030
Current Liabilities$184,333$74,588$299,278
Total Net Assets$111,928$101,861$176,052
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar AmountContributions, gifts, grants $481,627Contributions, gifts, grants $452,419Contributions, gifts, grants $584,793
Second Highest Funding Source & Dollar AmountAnnual Meeting Fees $188,234Annual meeting fees $111,897Fundraising $57,161
Third Highest Funding Source & Dollar AmountAdvertising Sales $50,591Fundraising $52,543Brochure and magazine sales $42,853
CEO/Executive Director Compensation $75,001 - $100,000
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities1.592.351.62
Long Term Solvency
Fiscal Year201620152014
Long-Term Liabilities/Total Assets0%0%4%
Financials Comments
Financial Comments by Foundation Financial information taken from IRS Form 990 and audit documents, where provided.  Individual contributions include foundation and corporate support.  Federal tax returns reconcile with audited financial statements provided.
Nonprofit American Association of Kidney Patients, Inc.
Address 14440 Bruce B. Downs Blvd.
Tampa, FL
Phone 813 636-8100 1003

THE COMMUNITY FOUNDATION OF SARASOTA COUNTY, INC. IS A REGISTERED 501(C)(3) NON-PROFIT CORPORATION. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP-FLA) OR FROM THE WEBSITE: WWW.FRESHFROMFLORIDA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. ONE HUNDRED PERCENT (100%) OF EACH CONTRIBUTION IS RECEIVED BY THE COMMUNITY FOUNDATION OF SARASOTA COUNTY. REGISTRATION #SC-02471.