Organizations Filed Purposes:
PROMOTE PROGRAMS OF RESEARCH, ADVOCACY, EDUCATION, SUPPORT AND AWARENESS IN ORDER TO DISCOVER TREATMENTS AND A CURE FOR POLYCYSTIC KIDNEY DISEASE AND IMPROVE THE LIVES OF ALL IT AFFECTS.
WE GIVE HOPE. WE FUND RESEARCH, ADVOCATE FOR PATIENTS, AND BUILD A COMMUNITY FOR ALL IMPACTED BY PKD.
RESEARCH:SINCE ITS FOUNDING IN 1982, THE PKD FOUNDATION HAS INVESTED MORE THAN $50 MILLION IN MORE THAN 1,300 RESEARCH, CLINICAL AND SCIENTIFIC GRANTS, FELLOWSHIPS AND SCIENTIFIC MEETINGS. THE FOUNDATION'S FINANCIAL COMMITMENT OVER THE YEARS HAS SEEN RESULTS ON A LOCAL AND EVEN GLOBAL LEVEL, INCLUDING INITIATING FUNDING FOR YOUNG INVESTIGATORS FROM AROUND THE WORLD; SUPPORTING INNOVATIVE RESEARCH IDEAS; AND PROVIDING BRIDGE FUNDING TO RESEARCHERS WORLD-WIDE TO APPLY FOR LARGER NATIONAL INSTITUTES OF HEALTH (NIH) GRANTS. THE FOUNDATION'S FISCAL YEAR INVESTMENTS IN RESEARCH IS OUTLINED BELOW.RESEARCH GRANTS: INVESTED $1,800,000 ON GRANT FUNDING TO 23 PKD PROJECTS THAT FOCUS ON RISK FACTORS FOR PKD MANIFESTATIONS, BETTER UNDERSTANDING OF CELLULAR MECHANISMS THAT ACCELERATE PROGRESSION AND IDENTIFYING TARGETS FOR PKD. THE FOUNDATION ALSO COMMITTED TO FUNDING ONE JUNIOR INVESTIGATOR WITH A THREE-YEAR COMMITMENT THROUGH THE YOUNG INVESTIGATOR AWARD.FELLOWSHIPS: PROVIDED $450,000 IN FELLOWSHIP FUNDING TO 5 SUPPORT TRAINEES IN OBTAINING RESEARCH EXPERIENCE AS THEY INITIATE CAREERS IN PKD.CORE GRANTS: INVESTED $40,000 TO SUPPORT CORE RESEARCH GRANTS SERVICES AND RESOURCES FOR PKD SCIENTISTS IN A PROMINENT GENETIC LAB SO THAT FOUNDATION DOLLARS CAN BE LEVERAGED ACROSS THE PKD RESEARCH COMMUNITY. ADPKD REGISTRY: LED THE DEVELOPMENT AND IMPLEMENTATION OF THE NATION'S FIRST ADPKD PATIENT REGISTRY TO COLLECT VALUABLE DATA ABOUT THE PKD EXPERIENCE DIRECTLY FROM PATIENTS AND SUPPORT THE RECRUITMENT OF PARTICIPANTS FOR CLINICAL STUDIES.
EDUCATION AND SUPPORT:THE FOUNDATION PROVIDES LOCAL SERVICES THROUGH ITS MORE THAN 60 VOLUNTEER-RUN CHAPTERS ACROSS THE COUNTRY. THESE VOLUNTEERS BRING TO LIFE THE MISSION OF THE ORGANIZATION BY ENSURING THAT NO ONE FACES THIS DISEASE ALONE. EDUCATION MEETINGS PROVIDE VALUABLE INFORMATION FROM HEALTH CARE PROFESSIONALS, WHILE SUPPORT ACTIVITIES RANGE FROM LENDING A LISTENING EAR TO ORGANIZED GROUP OUTINGS. THE FOUNDATION HAS MORE THAN 1917 ACTIVE VOLUNTEERS.CHAPTERS RAISE FUNDS FOR THE FOUNDATION THROUGH EVENTS WHICH ALSO INCREASE AWARENESS OF PKD AND CONNECT LOCAL PATIENTS AND FAMILIES TO EACH OTHER. NINETY ONE CHAPTER FUNDRAISING AND THIRD- PARTY EVENTS WERE HELD THIS YEAR THAT RAISED $623,223. CHAPTERS ALSO RAISE AWARENESS AND MONEY THROUGH THE WALK FOR PKD, THE FOUNDATION'S SIGNATURE FUNDRAISING AND PUBLIC AWARENESS EVENT. THE WALK TOOK PLACE IN 54 CITIES ACROSS THE NATION EACH YEAR AND HAS RAISED NEARLY $32 MILLION SINCE 2000.ON A NATIONAL LEVEL, THE FOUNDATION PROVIDES IN-DEPTH RESOURCES AND EDUCATION ABOUT LIVING WITH PKD TO EMPOWER PEOPLE TO MANAGE THEIR HEALTH. OFFERINGS INCLUDE WEBINARS, VIDEOS, A MULTI-FACETED WEBSITE (CONNECT.PKDCURE.ORG), ONLINE COMMUNITIES AND PRINT MATERIALS. ADDITIONALLY, WEBINARS WERE ATTENDED OR VIEWED BY 383 ATTENDEES.THE ARPKD/ADPKD PATIENT HANDBOOK IS AVAILABLE FOR PEOPLE WITH PKD TO HELP THEM NAVIGATE THEIR DISEASE. 110 HANDBOOKS WERE MAILED AND 430 DOWNLOADED.
AWARENESS AND ADVOCACY:THE FOUNDATION RAISES AWARENESS THROUGH MARKETING AND PUBLIC RELATIONS SO PEOPLE KNOW WHAT PKD IS, WHAT THE FOUNDATION DOES, AND HOW TO GET INVOLVED. MARKETING MATERIALS INCLUDE PKD NEWS MONTHLY EMAIL NEWSLETTER, OTHER TARGETED EMAILS, DIRECT MAIL SOLICITATIONS, SOCIAL MEDIA, THE PKD BLOG AND PKDCURE.ORG. VOICES OF PKD (HTTPS://CONNECT.PKDCURE.ORG/VOICES-OF-PKD/) FEATURES TESTIMONIALS AND STORIES ABOUT PEOPLE'S EXPERIENCES WITH THE DISEASE. THE FOUNDATION HAS AN ACTIVE SOCIAL MEDIA COMMUNITY, REACHING MORE THAN 34,000 FACEBOOK FANS, 7,000 TWITTER FOLLOWERS, 5,000 INSTAGRAM FOLLOWERS, AND 1,500 LINKEDIN FOLLOWERS. PKDCURE.ORG RECEIVED 998,612 UNIQUE VISITS AND PKDCONNECTION.ORG RECEIVED 268,609 VISITS.THE FOUNDATION PLAYS A KEY ROLE IN LEGISLATIVE ADVOCACY TO SUPPORT PKD-RELATED INITIATIVES. THE PKD ADVOCACY ACTION CENTER (PKDCURE.ORG/ADVOCACY) SENT ADVOCACY ALERTS TO 13,000 PKD ADVOCATORS ABOUT LEGISLATIVE AND PUBLIC POLICY ISSUES IMPACTING PKD PATIENTS AND FAMILIES. THE FOUNDATION JOINS WITH OTHER KIDNEY DISEASE-RELATED ORGANIZATIONS IN EVENTS THAT ALLOW ADVOCATES TO MEET WITH MEMBERS OF CONGRESS TO RAISE AWARENESS OF PKD AND DISCUSS LEGISLATIVE PRIORITIES.
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 |
|---|
| Andy Betts | PRESIDENT & CEO | 40 | $235,343 |
| David Baron | CHIEF SCIENTIFIC OFFICER | 40 | $206,170 |
| Kenneth Mclaughlin | COO - LEFT DECEMBER 2018 | 40 | $139,329 |
| Susan Deremer | DIRECTOR OF LEADERSHIP GIFTS | 40 | $113,440 |
| Alexis Denny | DIRECTOR OF GOVT AFFAIRS | 40 | $106,873 |
| Robin Strachan - Left July 2019 | PLANNED GIVING DIRECTOR | 40 | $103,943 |
| Jerry Waxman | DIRECTOR | 1 | $0 |
| Terry Watnick | DIRECTOR | 1 | $0 |
| Fran Towey | DIRECTOR | 1 | $0 |
| Rob Roth | DIRECTOR | 1 | $0 |
| Craig Ramseyer | DIRECTOR | 1 | $0 |
| Dwight Odland | DIRECTOR | 1 | $0 |
| Michal Mrug | DIRECTOR | 1 | $0 |
| Andrea Kringstein | DIRECTOR | 1 | $0 |
| Michele Karl | DIRECTOR | 1 | $0 |
| Georgina Haberman | DIRECTOR | 1 | $0 |
| Katherine Dell | DIRECTOR | 1 | $0 |
| Ashley Brown | DIRECTOR | 1 | $0 |
| Bill Brazell | DIRECTOR | 1 | $0 |
| Paula Hutchinson | SECRETARY | 1 | $0 |
| Brock Nelson | TREASURER | 1 | $0 |
| Beverly Benson | VICE-CHAIR | 1 | $0 |
| Klee Kleber | CHAIR | 2 | $0 |
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