2022-11-14T10:30:55-06:00 2021-12-31 954557617 Harrington Group CPAs LLP 2698 Mataro Street Pasadena CA 91107 990 2021-01-01 454597425 The Familial Hypercholesterolemia Foundation FAMI 6265834674 680 E Colorado Blvd 180 Pasadena CA 91101 Katherine Wilemon CEO 6265834674 2022-11-14 1 Katherine Wilemon 999009999 Tonetta L Conner P01775198 6264036801 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z FH Foundation Katherine Wilemon 680 E Colorado Blvd 180 Pasadena CA 91101 4759952 0 X www.thefhfoundation.org X 2012 CA The FH Foundation is a patient-centered nonprofit organization dedicated to research, 8 7 11 7 0 0 2147210 3613537 1570126 1114100 25313 32015 13198 300 3755847 4759952 0 0 0 0 1398712 1264378 0 0 79225 1721964 1592629 3120676 2857007 635171 1902945 4371270 6401928 307977 384859 4063293 6017069 X The Familial Hypercholesterolemia Foundation ("The FH Foundation") was incorporated February 17, 2012 as a California nonprofit corporation. The FH Foundation is a patient-centered nonprofit dedicated to education, advocacy, and research of familial hypercholesterolemia (FH). Our mission is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia and Lipoprotein(a). Through research, advocacy, and education we play a critical role in driving change, and empower families to navigate their own health. 0 0 459668 1114100 FIND FH - Flag/Identify/Network/Deliver is a national precision screening initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH. FIND FH includes the development, validation, and implementation of data models to flag individuals who need to be screened by a clinician for a possible FH diagnosis. This initiative directly addresses the fact that most individuals with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. The FIND FH Model searches healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, the Family Heart Foundation identifies healthcare providers (HCPs) with patients who have medical records containing key features consistent with an individual having FH. Nationally, FIND FH has identified over 1.3 million individuals with profiles consistent with FH. The Family Heart Foundation is implementing HCP and individual engagement practices at multiple major health systems participating in the Flag Identify Network Deliver Collaborative Learning Network (FIND CLN). These large-scale implementation projects are designed to reduce barriers to evidence-based care and to improve patient outcomes. At each health system, we engage stakeholders and act as a hub for learning across roles within the health system. The Family Heart Foundation has identified and addressed numerous barriers and facilitators to implementation. This growing expertise positions us as a leading organization to implement FH programs in clinical settings across the US. In the future, the Family Heart Foundation hopes to expand our FIND efforts to identify those at risk for high Lipoprotein(a). 451301 CASCADE FH Registry - To improve the understanding of the state of diagnosis, treatment, and outcomes for FH in the United States, in 2013 the Family Heart Foundation launched a national FH patient registry, a key tool for FH research. Since then, we have convened a network of over 40 leading clinical sites across the US, enrolled over 6,000 individuals in the Registry, who are followed annually. The Family Heart Foundation, in partnership with our Principal Investigators have published 19 manuscripts, abstracts, and posters, contributing to the evidence base for healthcare decision making for FH at the patient, healthcare provider, health system, and policy levels. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) collects comprehensive longitudinal data on adults and children with diagnosed FH, including baseline and follow-up information on demographics, laboratory values, treatment, and clinical events. CASCADE FH Registry research has quantified gaps in care, including late diagnosis, delayed treatment, disparities in care, cardiovascular outcomes, and factors that contribute to LDL goal attainment and to cardiovascular risk. This is the only longitudinal observational research study of its kind in the US. 334429 FOCUS - FH Optimal Care in the US (FOCUS) creates and disseminates effective tools for patients, healthcare providers, policy makers, payers, and other partners to be used throughout the diagnosis, treatment, and long-term management phases of FH. FOCUS provides data-backed assistance utilizing clinical, economic, and humanistic outcomes to better inform the path forward. This work quantifies the challenges that individuals with FH have in gaining access to important new therapies. The FH Foundation addresses these challenges through data insights, awareness-raising efforts, educational tools (including the FOCUS Multimedia Toolkit and a mobile diagnostic app), and engagement of health plans and systems. 150113 FH Global Summit - The FH Foundation's FH Global Summit is an invitation-only conference bringing together world-renowned experts in FH, genetics, and healthcare policy to improve the awareness, diagnosis and management of FH. This two-day event features compelling and cutting edge presentations that share insights and research to enhance the scientific understanding of FH. Presenters and guests include leading cardiologists, lipidologists, researchers, physicians, and patients. The event provides a grand platform to share insights and practices underline for concerted and urgent action on behalf of those living with FH. 290478 FH Awareness - The FH Awareness Campaign is an annual international health awareness and educational campaign that raises awareness of FH, bringing worldwide attention to its diagnosis and treatment throughout the month of September. As a key part of the campaign's development, the FH Foundation established FH Awareness Day on September 24th, which is now strengthened by multiple state proclamations and celebrated on a global scale.Since 2012, the FH Awareness Campaign has resulted in a potential reach of more than 80 million through its strategic use of news releases and PSAs, outdoor media, podcasts, and social media, including an annual "Tweet-a-thon." 13188 Global Network - The Global Network is an effort to build an international collaborative community to address gaps in care for individuals with FH. The FH Foundation convenes stakeholders from around the world and acts as an honest broker for data driven solutions to improve outcomes for those living with FH. The Global Network is our effort to extend our mission and impact on a broader stage. This program includes the translation and delivery of our printed and online materials into many languages. Our website and social media platforms are often the first line of communication and the Global Network manages this outreach outside of the United States. In addition to the FH Foundation Staff, the members of the FH Foundation Scientific Advisory Board serve as ambassadors for our mission at international conferences, as leaders of professional organizations, and as principal investigators of scientific projects at major universities - key initiatives that extend our Global Network and accelerate our outreach. 27360 The FH Foundation's Corporate Advisory Council (CAC) offers companies the opportunity to invest in the continued growth and success of the Familial Hypercholesterolemia (FH) Foundation by providing counsel and support to the leadership of the FH Foundation. The CAC is a unique forum for leaders in the pharmaceutical and biopharmaceutical industries, payers, communications sectors, bioinformatics, genomics, and healthcare institutions to engage in a bi-directional conversation aimed at positively impacting the FH community. The FH Foundation relies on the collective experience of CAC members to empower and activate our mission. 778477 The FH Foundation conducted other smaller program activities throughout the year. 1259616 2505014 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 14 0 1 11 1 0 0 0 0 0 0 0 0 0 0 0 0 X 8 7 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CA X The Organization 6265834674 680 E Colorado Blvd 180 Pasadena CA 91101 William Neal Chair Emeritus (deceased 1/21) 1.00 X X 0 0 0 Dan Rader Vice Chair 1.00 X X 0 0 0 Stacey Lane Chair 1.00 X X 0 0 0 Michael Shapiro Secretary 1.00 X X 0 0 0 Allison Jamison Treasurer 1.00 X X 0 0 0 Katherine Wilemon CEO/Board Member 40.00 X X 340251 0 0 Barry Brooks Board Member 1.00 X 0 0 0 Joshua Knowles Board Member 1.00 X 0 0 0 Catherine Ahmed VP of Policy 40.00 X 180000 0 0 E Erikson Finance Manager 40.00 X 115385 0 15900 M McGowan CMO 20.00 X 115385 0 0 751021 0 15900 4 0 1 0 Atomo Inc 1603 Falcon Ledge Dr Austin TX 78746 Consulting 677324 Ernst & Young LLP 200 Plaza Drive Secaucus NJ 07094 Web SEO & Hosting 178567 Google Inc Cloud 1600 Amphitheatre Parkway Mountain View CA 94043 Data Storage 113631 3 427397 3186140 3613537 Contract fees 900099 1114100 1114100 1114100 32015 32015 Other income 900099 300 300 300 4759952 1114100 0 32315 340251 323238 17013 793122 618448 122779 51895 58984 45271 11887 1826 72021 55278 14514 2229 51958 29611 22347 16775 11172 4860 743 107079 75218 25881 5980 441539 433799 1164 6576 36730 7651 26549 2530 19819 13199 5742 878 15197 8862 4563 1772 12278 10630 802 846 560 19 541 8973 6729 898 1346 16880 11892 2610 2378 Data & Research 690317 690239 78 Legal settlement 160000 160000 Bank charges 10689 10463 226 Membership/subscription 3835 3758 77 2857007 2505014 272768 79225 1477314 2526626 1903380 1642172 70000 1197431 75000 11527 11291 36891 29692 12554 7199 883819 941800 12676 409 4371270 6401928 159810 349859 0 35000 148167 0 307977 384859 X 2606453 3194632 1456840 2822437 4063293 6017069 4371270 6401928 1902945 50831 0 X 0 0 0 X 4249484 1820693 1848898 2147210 3613537 13679822 4249484 1820693 1848898 2147210 3613537 13679822 8707225 4972597 3464 9206 6761 25313 32015 76759 6675 149 8243 13198 300 28565 13785146 6919704 0.36070 0.30070 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 63887 0 0 63887 0 Part II-B, Line 1: The FH Foundation hired the firm McAllister & Quinn to help us advance our efforts in educating Members of Congress on the need to find, screen, diagnose and treat individuals with familial hypercholesterolemia (FH) - approximately 1.3 million Americans and only 15% of them know they have FH. McAllister & Quinn developed a strategy with us to advocate to Members of Congress for specific funding to address this unmet need. The strategy began with McAllister & Quinn attending a volunteer education seminar in January 2019 where they trained 22 volunteers (Advocates) and FH Foundation staff members about the Congressional appropriations process and how to ask Members for their support. Prior to this Advocates and staff training, FH Foundation staff drafted a letter of request asking for a specific amount of funds to be added to the Centers for Disease Control and Prevention (CDC) budget to address FH. Another letter of request was drafted asking for FH to be added to the eligible topics for research funding in the Peer Reviewed Medical Research Program of the Department of Defense. FH Foundation staff members set up Congressional visits with Members or their staff for the Advocates and FH Foundation staff members, with the help of McAllister & Quinn. Twenty-eight meetings were held with Members of Congress in January 2019 and approximately 10 additional meetings were held throughout the year. After these meetings, the Advocates and FH Foundation staff members followed up by email with the Members throughout the FY20 appropriations process. In 2020, we continued our engagement with McAllister & Quinn in order to advocate for funding for the CDC and keeping familial hypercholesterolemia as an eligible topic for research funding in the Peer Reviewed Medical Research Program of the Department of Defense. We followed a similar plan and went to Capitol Hill with 19 of our trained volunteer Advocates in January 2020 and held 30 meetings with Members of Congress or their staff. We followed up with several meetings by video conference throughout the year, as in-person meetings were not possible due to Covid. Advocates and other FH Foundation volunteers followed up with emails to Members and their staff throughout the FY21 appropriations process. The lobbying resulted in CDC being appropriated $100,000 for the second time to specifically address familial hypercholesterolemia. In addition, familial hypercholesterolemia was continued as an eligible research topic in the DoD Peer Reviewed Medical Research Program. In 2021, we again engaged McAllister & Quinn to advocate for funding to address FH for the CDC and to keep FH as an eligible topic for research funding in the Peer Reviewed Medical Research Program of the Department of Defense. Covid further restricted our lobbying efforts in 2021. All requests to Members of Congress were made via email and by submitting letters and appropriation request forms by email or portal to Congressional offices. Two virtual meetings were held with specific local offices, but no volunteer Advocates visited Capitol Hill for in-person meetings. Due to Covid, our efforts in 2021 were less than in previous years. Once again, the lobbying resulted in CDC being appropriated $100,000 for the third time to specifically address familial hypercholesterolemia. In addition, familial hypercholesterolemia was continued as an eligible research topic in the DoD Peer Reviewed Medical Research Program. 36891 29692 7199 7199 X 4810783 50831 50831 4759952 0 4759952 2857007 0 2857007 0 2857007 Part X, Line 2: The FH Foundation is exempt from taxation under Internal Revenue Code Section 501(c)(3) and California Revenue and Taxation Code Section 23701d. Generally accepted accounting principles provide accounting and disclosure guidance about positions taken by an organization in its tax returns that might be uncertain. Management has considered its tax positions and believes that all of the positions taken by The FH Foundation in its federal and state exempt organization tax returns are more likely than not to be sustained upon examination. The FH Foundation's returns are subject to examination by federal and state taxing authorities, generally for three and four years, respectively, after they are filed. X 0 0 0 0 0 0 0 1 0 Katherine Wilemon CEO/Board Member 267751 0 72500 0 0 0 0 0 0 0 340251 0 0 0 Catherine Ahmed VP of Policy 180000 0 0 0 0 0 0 0 0 0 180000 0 0 0 Part I, Line 7 Katherine Wilemon's bonus amount was determined and agreed by the FH Foundation Board, each year in the spring, based upon performance from the prior year. A. Sheldon's bonus amount was determined by Katherine WIlemon based upon performance in 2020. Form 990, Part VI, Section B, line 11b The Form 990 is e-mailed to each member and reviewed via electronic media prior to filing. Form 990, Part VI, Section B, line 12c Conflicts of interest are monitored annually and reviewed by the governing body prior to approval or determination of action. Form 990, Part VI, Section B, line 15a The CEO's salary is reviewed on an annual basis by the Board of Directors and then approved by the Executive Committee. Part VI, line 15(b) was answered "no" as there were no other officers or key employees as defined in Form 990 instructions who received compensation. Form 990, Part VI, Section C, line 19 All documents are available to the public upon request.