2017-04-27T14:36:03-05:00 2016-12-31 954557617 Harrington Group CPAs LLP 234 East Colorado Blvd Suite M150 Pasadena CA 91101 990 2016-01-01 454597425 The Familial Hypercholesterolemia Foundation FAMI 6265834674 959 E Walnut Street No 220 Pasadena CA 91106 Katherine Wilemon CEO 6265834674 2017-04-27 1 Tonetta L Conner P01775198 6264036801 64.88.174.3 2017-04-27 12:35:43 PD P 30438777C974F510D619FA0AF5CBFAC355A331C1 30438777C974F510D619FA0AF5CBFAC355A331C1 2016 2021-01-29 14:40:06Z The FH Foundation Katherine Wilemon 959 E Walnut Street No 220 Pasadena CA 91106 6162693 0 X www.thefhfoundation.org X 2012 CA The Familial Hypercholesterolemia Foundation's (FH) mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds. 8 7 11 50 0 0 2948133 3993797 1400000 2166100 1437 2796 0 0 4349570 6162693 0 0 0 0 587888 939141 0 0 225819 2594027 3151331 3181915 4090472 1167655 2072221 4836419 6970129 117776 179265 4718643 6790864 X The FH Foundation is a patient-centered nonprofit organization dedicated to education, advocacy, and research of Familial Hypercholesterolemia(FH). 0 0 1297314 1400000 FIND FH - Flag/ Identify/ Network / Deliver - is a national initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH patients. FIND FH directly addresses the fact that 90-99% of patients with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. FIND FH includes the development, validation, and implementation of algorithms to flag individuals who need to be screened by a clinician for a possible FH diagnosis. The algorithms search healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, the FH Foundation identifies healthcare providers (HCPs) with patients who have medical records containing key features consistent with a person having FH and reaches out to those HCPs to help them find the patients to be screened. 1218035 150000 The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) is the only active national registry for patients with heterozygous and homozygous FH in the United States. It serves as a key instrument in supporting health service planning, increasing knowledge of the disease, pooling data for epidemiological research, evaluating trends over time, and promoting clinical outcomes. The CASCADE FH Registry launched in 2013 with an innovative hybrid design to maximize data collection: (A) data is collected from partnering clinical sites, and (B) patients can directly enter their data via a user-friendly patient portal hosted on the FH Foundation website. Data entered through both methods are secure and can be accessed through queries. Data includes baseline and follow-up information on demographics, laboratory values, treatment, and clinical events. 605120 16100 Summit - The FH Global Summit is an annual event solely dedicated to the science and treatment of FH. It is a global gathering of medical experts, patient advocacy organizations, health care providers, and individuals with FH. The two-day event features compelling presentations that provide a platform to share insights and practices for improved awareness, diagnosis and treatment of FH. 229972 Advocates for Awareness - The Advocates for Awareness program recruits volunteers who represent the FH Foundation and the larger FH community by sharing their experiences with FH and helping others through their own journeys. 217466 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. 93799 Global Network 541237 3661706 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 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 15 0 1 11 1 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 0 0 1 0 0 CA X The Organization 6265834674 959 E Walnut Street No 220 Pasadena CA 91106 William Neal Chair 1.00 X X 0 0 0 Stacey Lane Vice Chair 1.00 X X 0 0 0 Seth Baum Secretary/Treasurer 1.00 X X 0 0 0 Katherine Wilemon CEO 40.00 X X 266026 0 0 Barry Brooks Board Member 1.00 X 0 0 0 Joshua Knowles Board Member 1.00 X 0 0 0 Dan Rader Board Member 1.00 X 0 0 0 Christian Jacobs Board Member 1.00 X 0 0 0 Carole King Dir. of Development 40.00 X 125000 0 0 391026 0 0 2 0 1 0 DCRI PO Box 17969 Durham NC 27715 Consulting 617113 Atomo 700 Lavaca Ste 1400-2480 Austin TX 78701 Consulting 450000 IMS Health Inc PO Box 8500-4290 Philadelphia PA 19178 Consulting 393600 DMD 10255 West Higgins Rd Ste 280 Rosemont IL 60018 Consulting 172870 4 3993797 3993797 Contract fees 900099 2150000 2150000 Conference fees 900099 16100 16100 2166100 2796 2796 6162693 2166100 0 2796 X 266026 168782 37244 60000 589656 404146 61042 124468 83459 56924 7901 18634 96822 95660 1065 97 52620 51988 579 53 1479372 1460356 17567 1449 118074 105824 9897 2353 69680 48167 16883 4630 19644 13528 4770 1346 68803 49248 15306 4249 241664 225960 11692 4012 5679 1826 3005 848 3720 3088 632 2301 4211 -1999 89 Data & Research 597981 590805 6578 598 Events 362511 354021 6621 1869 Human resource 17599 13355 3310 934 Registration fees & tax 13798 13353 387 58 1063 464 467 132 4090472 3661706 202947 225819 719560 1352119 2806053 5058937 1280237 486000 50680 2600 0 24272 7656 17515 16616 10454 5777 4836419 6970129 117776 179265 117776 179265 X 1907517 4151554 2811126 2639310 4718643 6790864 4836419 6970129 2072221 0 X 0 1 X 1 0 X 581875 2515111 2008384 2948133 3993797 12047300 581875 2515111 2008384 2948133 3993797 12047300 10316538 1730762 1439 2796 4235 966 1222 3494 5682 12057217 4654100 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 12496 2447 10049 11776 5209 6567 16616 X 6162693 0 6162693 0 6162693 4090472 0 4090472 0 4090472 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 0 0 Katherine Wilemon CEO 241026 0 25000 0 0 0 0 0 0 0 266026 0 0 0 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. Form 990, Part IX, line 11g Consultants/temporary staff: Program service expenses 1,460,356. Management and general expenses 17,567. Fundraising expenses 1,449. Total expenses 1,479,372.