Civic Intelligence

The Familial Hypercholesterolemia Foundation DBA the Fh Foundation

990 • Fiscal year 2017 • EIN 45-4597425

Jan 01, 2017 to Dec 31, 2017 • Filed on Dec 20, 2018

Organization Profilewww.thefhfoundation.org
959 E Walnut Street No 220Pasadena, CA 91106

(626) 583-4674

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

24th percentile

0.02x

Higher debt load relative to assets than 24% of similar nonprofits.

2017 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2017

Liabilities / Revenue

17th percentile

0.03x

Higher debt load relative to revenue than 17% of similar nonprofits.

2017 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2017

Net Margin

69th percentile

11%

Higher net margin than 69% of similar nonprofits.

2017 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2017

Top Officer Pay

89th percentile

$311,075

Higher top officer pay than 89% of similar nonprofits.

Top officer pay equals 5.5% of source-year revenue.

2017 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2017

Asset Growth

67th percentile

9.6%

Faster asset growth than 67% of similar nonprofits.

2017 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2016 to 2017

Revenue Growth

20th percentile

-7.7%

Faster revenue growth than 20% of similar nonprofits.

2017 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2016 to 2017

Balance Sheet
Liabilities / Assets24th percentile

Assets

Up

$7,642,582

Up $672,453 (+9.6%) from 2016

Net Assets

Up

$7,461,747

Up $670,883 (+9.9%) from 2016

Liabilities

Up

$180,835

Up $1,570 (+0.9%) from 2016

Revenue And Expenses
Liabilities / Revenue17th percentileNet Margin69th percentile

Revenue

Down

$5,690,012

Down $472,681 (-7.7%) from 2016

Expenses

Up

$5,037,196

Up $946,724 (+23%) from 2016

Net Income

Down

$652,816

Down $1,419,405 (-68%) from 2016

Historical Trend

Balance Sheet Trend

Asset Growth67th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$8.0M$6.0M$4.0M$2.0M$0Assets 2012: $444,503Liabilities 2012: $0Net Assets 2012: $444,5032012Assets 2013: $366,923Liabilities 2013: $5,346Net Assets 2013: $361,5772013Assets 2014: $3,582,214Liabilities 2014: $31,226Net Assets 2014: $3,550,9882014Assets 2015: $4,836,419Liabilities 2015: $117,776Net Assets 2015: $4,718,6432015Assets 2016: $6,970,129Liabilities 2016: $179,265Net Assets 2016: $6,790,8642016Assets 2017: $7,642,582Liabilities 2017: $180,835Net Assets 2017: $7,461,7472017Assets 2018: $5,284,854Liabilities 2018: $463,353Net Assets 2018: $4,821,5012018Assets 2019: $3,585,638Liabilities 2019: $219,414Net Assets 2019: $3,366,2242019Assets 2020: $4,371,270Liabilities 2020: $307,977Net Assets 2020: $4,063,2932020Assets 2021: $6,401,928Liabilities 2021: $384,859Net Assets 2021: $6,017,0692021Assets 2022: $4,488,377Liabilities 2022: $554,614Net Assets 2022: $3,933,7632022Assets 2023: $5,313,676Liabilities 2023: $1,133,524Net Assets 2023: $4,180,1522023Assets 2024: $7,350,370Liabilities 2024: $2,079,880Net Assets 2024: $5,270,4902024

Highlighted filing

2017

Assets$7,642,582
Liabilities$180,835
Net Assets$7,461,747
Open 2017 Filing

Operations Trend

Revenue Growth20th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$10M$5.0M$0-$5.0MExpenses 2012: $138,3382012Revenue 2013: $762,377Expenses 2013: $845,303Net Income 2013: -$82,9262013Revenue 2014: $3,099,878Expenses 2014: $1,448,127Net Income 2014: $1,651,7512014Revenue 2015: $4,349,570Expenses 2015: $3,181,915Net Income 2015: $1,167,6552015Revenue 2016: $6,162,693Expenses 2016: $4,090,472Net Income 2016: $2,072,2212016Revenue 2017: $5,690,012Expenses 2017: $5,037,196Net Income 2017: $652,8162017Revenue 2018: $3,098,812Expenses 2018: $5,685,786Net Income 2018: -$2,586,9742018Revenue 2019: $3,459,476Expenses 2019: $5,012,467Net Income 2019: -$1,552,9912019Revenue 2020: $3,755,847Expenses 2020: $3,120,676Net Income 2020: $635,1712020Revenue 2021: $4,759,952Expenses 2021: $2,857,007Net Income 2021: $1,902,9452021Revenue 2022: $2,813,780Expenses 2022: $4,729,443Net Income 2022: -$1,915,6632022Revenue 2023: $6,535,608Expenses 2023: $6,362,500Net Income 2023: $173,1082023Revenue 2024: $8,891,212Expenses 2024: $7,841,100Net Income 2024: $1,050,1122024

Highlighted filing

2017

Revenue$5,690,012
Expenses$5,037,196
Net Income$652,816
Open 2017 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2017 to Dec 31, 2017
Signed
Dec 20, 2018
Return Version
2017v2.3
Gross Receipts
$5,690,012
Mission and Program Overview

Mission

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.

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). The 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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$5,058,937$3,662,401▼ $1,396,536
Pledges and Grants Receivable$486,000$2,300,000▲ $1,814,000
Accounts Receivable$50,680$679,449▲ $628,769
Investments in Publicly Traded Securities-$530,978-
Cash and Non-Interest-Bearing Accounts$1,352,119$447,147▼ $904,972
Land, Buildings, and Equipment, Net$16,616$11,468▼ $5,148
Prepaid Expenses and Deferred Charges-$5,362-
Total Assets$6,970,129$7,642,582▲ $672,453
Other Assets Total$5,777$5,777→ $0
Liabilities
Accounts Payable and Accrued Expenses$179,265$180,835▲ $1,570
Total Liabilities$179,265$180,835▲ $1,570
Net Assets / Fund Balance
Unrestricted Net Assets$4,151,554$4,798,074▲ $646,520
Temporarily Rstr Net Assets$2,639,310$2,663,673▲ $24,363
Total Net Assets Fund Balance$6,790,864$7,461,747▲ $670,883
Total Liabilities and Net Assets / Fund Balance$6,970,129$7,642,582▲ $672,453

Asset Categories

AssetBook ValueDepreciationBasis
Leasehold Improvements$7,261$5,235$12,496
Equipment$4,207$7,569$11,776
Compensation and Service Providers
Top Officer Pay89th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Katherine WilemonCEO/Board MemberFT$300,000$11,075$311,075
Stacey StanleyExecutive AssistantFT$104,587$8,260$112,847
Catherine AhmedDirector or OutreachFT$103,769-$103,769

Board Members and Trustees

NameTitle
William NealChair
Stacey LaneVice Chair
Barry BrooksBoard Member
Christian JacobsBoard Member
Dan RaderBoard Member
Joshua KnowlesBoard Member
Maria SophoclesBoard Member
Seth BaumSecretary/Treasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
David ZuzickConsulting959 East Walnut Street, Pasadena, CA 91106$338,391
Revenue and Support

Revenue Composition

Contributions and Grants
$4,249,484
Program Service Revenue
$1,420,300
Investment Income
$13,553
Other Revenue
$6,675
All Other Contributions
$4,249,484
Change in Net Assets
$652,816

Audited Revenue Reconciliation

Revenue per Audited Statements
$5,690,012
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$18,067
Total Revenue per Audited Statements
$5,708,079
Total Revenue per Form 990
$5,690,012
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$3,803,126
Salaries, Compensation, and Employee Benefits$1,234,070
Total Fundraising Expense$212,791
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$678,213$27,588$20,554$726,355
Fees for Services Other$563,851$20,076$20,111$604,038
Advertising$341,393$24,503$6,989$372,885
Current Officers, Directors, Trustees, and Key Employees$290,458$11,814$8,803$311,075
Travel$160,990$29,218$4,034$194,242
Payroll Taxes$144,116$5,862$4,368$154,346
Office Expenses$63,749$69,330$2,225$135,304
Information Technology$121,432$2,611$6,529$130,572
Fees for Services Legal$82,181$1,767$4,418$88,366
Fees for Services Accounting$61,213$1,316$3,291$65,820
Occupancy$51,080$8,686$845$60,611
Other Employee Benefits$39,491$1,606$1,197$42,294
Conferences and Meetings$6,008$7,844$495$14,347
Depreciation Depletion$4,215$933-$5,148
Other Expenses$1,277$1,328$34,578$2,605
Insurance$1,888$674-$2,562
All Other Expenses-$385-$385
Total Functional Expenses$4,569,448$254,957$212,791$5,037,196

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$5,037,196
Total Expenses per Audited Statements$5,037,196
Total Expenses per Form 990$5,037,196
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

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.”

Filing and Contact Details

Filer

Filer Name
The Familial Hypercholesterolemia
EIN
45-4597425
Phone
6265834674
Address
959 E Walnut Street No 220, Pasadena, CA 91106
Doing Business As
The FH Foundation

Signing Officer

Name
Katherine Wilemon
Title
CEO
Phone
6265834674
Signed
2018-12-20
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Katherine Wilemon
Formed
2012
Legal Domicile
CA
Voting Board Members
8
Independent Board Members
7
Employees
17
Volunteers
50

Preparer

Firm
Harrington Group CPAs LLP
Address
234 East Colorado Blvd Suite M150, Pasadena, CA 91101
Preparer
Tonetta L Conner
Phone
6264036801
Supplemental Narrative

Additional Explanations

Form 990, Part IX, line 11G

“Consultants/temporary staff: Program service expenses 563,851. Management and general expenses 20,076. Fundraising expenses 20,111. Total expenses 604,038.”

Financial Statement Notes

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.”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/MissionDesc0The FH Foundation is a patient-centered nonprofit organization dedicated to education, advocacy, and research of Familial Hypercholesterolemia(FH).
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IRS990/ProgSrvcAccomActy2Grp/Desc0CASCADE FH Registry - To address gaps in FH diagnosis and treatment, in 2013, the FH Foundation launched and now maintains a national FH patient registry. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) collects comprehensive longitudinal data on individuals with confirmed or suspected FH. The CASCADE FH Registry serves as a key instrument to support health service planning, increase knowledge on the disease, and pool data for epidemiological, clinical and outcomes research, as well as for therapy effectiveness. The CASCADE FH Registry employs 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. This dual-pathway enrollment design maximizes outreach and provides both the clinical and patient perspective. 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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0FH 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."
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0FIND 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 an estimated 90% 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.
IRS990/ProgSrvcAccomActyOtherGrp/Desc1Global 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.
IRS990/ProgSrvcAccomActyOtherGrp/Desc2FOCUS - 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.
IRS990/ProgSrvcAccomActyOtherGrp/Desc3FH 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.
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IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0THE FOUNDATION SATISFIES THE 10% FACTS AND CIRCUMSTANCES TEST TO BE A PUBLICLY-SUPPORTED 501(c)(3) ORGANIZATION. (1) Summary and Conclusion. The FH Foundation qualifies as a publicly supported 501(c)(3) charitable and educational nonprofit organization. It received greater than 10% of its support from public sources, it is organized and operated as a publicly-supported charitable entity, and, explained in detail below, it satisfies the facts and circumstances test as set forth in the Regulations. (2) The FH Foundation serves a critical public purpose. It saves lives by informing doctors, assisting public health officials, and educating the general public about Familial Hypercholesterolemia ("FH"), an inherited disorder that leads to aggressive and premature cardiovascular disease, if it's not properly diagnosed and treated. The Foundation works to save the lives of people with a life-threatening type of high cholesterol called Familial Hypercholesterolemia (referred to as "FH"). Heart disease is the number one cause of morbidity and mortality in the U.S., and is linked to high cholesterol, affecting 72 million Americans. FH is a genetic condition that causes high cholesterol and early heart disease. People with FH who are diagnosed can be helped if FH is diagnosed early and treated. FH is as prevalent as Type 1 diabetes and is twenty times more prevalent than Cystic Fibrosis. Approximately 1 out of every 250 people, equally at least 1.3 million people in the United States and about 30 million people worldwide have Familial Hypercholesterolemia. If untreated, a man with FH has a 50% chance of having a heart attack before the age of 50 and a woman with FH has a 30% chance of having a heart attack before the age of 60. Children who have inherited FH from two parents, most often do not live to 20 years old without the appropriate care. Effective therapies exist to manage the condition, but FH must be diagnosed and treated appropriately from childhood. Tragically, 90% of the people with FH are never accurately diagnosed or appropriately managed. As recently as 2011, a study showed that fewer than 30% of the cardiologists were able to diagnose a case of FH. That is why people with FH and doctors who understand FH created the FH Foundation, and provided its initial funding. The FH Foundation was incorporated in late 2011. The organization's mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. As noted, if left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds. In just seven years, the FH Foundation has made an astounding amount of progress in increasing FH awareness, amassing global information about patients, and bringing together doctors, patients, public health officials, and government leaders to discover and disseminate information about diagnosis and treatment options. (3) As part of its educational mission, the Foundation regularly publishes medical and scientific information that is widely used by physicians and is a key free resource for patients with FH. - The FH Foundation has led the publication of 17 peer-reviewed articles in scientific journals since 2014, including four in 2017. It is the leader in advancing scientific and medical understanding of FH. - The FH Foundation publishes medical information in 11 different languages, providing doctors and patients with information essential to understanding and treating FH. - The Foundation convenes the annual FH Global Summit, which produces medical and scientific information to educate doctors and other medical professionals about FH. It is the only educational conference dedicated to solving global challenges in the care and treatment of familial hypercholesterolemia through a multi-stakeholder and interdisciplinary approach. It brings together speakers and panelists who are experts in FH, genomics, precision medicine, alongside
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt1its charitable work. - The Foundation is the only research and advocacy organization dedicated to increasing scientific understanding and public awareness of this condition. It operates a website with extensive information and distributes educational materials about FH. - The FH Foundation's CASCADE FH Registry provides information available to the general public about issues regarding care, medical needs, observational and implementation research studies that are being conducted, and a research study that aims to understand the willingness for individuals with a clinical diagnosis of FH and their family members to undergo confirmatory genetic testing. - The FH Foundation's national CASCADE FH Registry and its related global Patient Portal provide comprehensive longitudinal data that fills gaps in FH diagnosis and treatment, including disparities in care. The Registry's data is available to researchers, public health officials (CDC, FDA), clinicians, patients, and other decision makers. The Foundation also disseminates this data in presentations to medical conferences, in the news media, and on social media. - The FH Foundation offers financial support to patients and to parents whose children have FH to attend the annual FH Global Summit so they can learn more about the disease, medical advances, and treatment options. - The Foundation provides families with the essential service of helping patients find physicians who understand and specialize in the treatment of FH. - The Foundation works with payers and providers directly to educate them about diagnosis and treatment of FH. - The Foundation provides the public with online and print tools to help patients navigate their own diagnosis, treatment, and access issues. - The Foundation hosts in-person events where FH families connect with each other, the work of the FH Foundation, and directly with FH medical experts. When needed, it financially supports the participation of individuals in these in-person events. It also supports the participation of its FH Advocates in medical meetings. It manages an online discussion group where people can go for reliable information about FH diagnosis and management and connect with each other. It answers questions by email and phone from people who contact it directly. - The Foundation maintains a list of clinical research studies on the website that is searchable so that patients or parents with children with FH can find medical resources or research studies. - The Foundation provides regular email updates on clinical trial research. - In 2012, the FH Foundation created the National FH Awareness Day as September 24. Today, this is a worldwide event, adopted by individuals and organizations. Its month-long campaign leading up to FH Awareness Day on September 24, 2017, reached an audience of 32 million people through the world. - With its FH advocates, it has succeeded in getting governors in California, Michigan, Ohio, Kansas, New York and Texas to have FH Awareness Day in their states. It is currently working on getting Georgia added to this list. - The FH Foundation engages in educational and outreach work to advance the awareness and interests of the general public about FH. With its educational outreach, FH Foundation has - Over 6,600 people following it on Twitter Over 1,000 people in an online Facebook discussion group from 54 countries around the globe Over 12,000 Likes" on Facebook and 6,600 follow it on Twitter Over 450 FH specialists featured in its Global Specialist Network Over 300 people attending the FH Global Summit each year Over 90 volunteer FH Advocates for Awareness Over 5,000 enrolled in CASCADE FH Registry Clinical Sites Over 500 enrolled in CASCADE FH Registry Patient Portal Over 4,500 people receive its newsletter In-person events for FH families held in Boston, Rochester MN, Portland OR, Dallas/Ft Worth, Northern CA, Southern CA, Miami, Dallas, Pasadena (x2), Arlington (x3),Rockville, Philadelphia, Maine, Kansas City.
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt2of a limited number of donors. Its Directors represent a broad cross-section of the views and interests of the community affected by FH, and have special knowledge and expertise about FH disease. - The Board of Directors consists of approximately 50% patients and 50% clinical experts. Six members of the board are physicians who treat FH patients and/or conduct FH clinical research studies without benefiting financially from the FH Foundation. - It has leaders in medicine as well as those who have played key roles in the public health fields advocating for others, such as its Chairman Dr. Bill Neal. Dr. Neal has been widely recognized for his public health leadership on behalf of children nationally and especially in his home state of West Virginia. Its Chief Scientific Officer, Dr. Dan Rader, has long worked with the NIH and in his position at the University of Pennsylvania on behalf of those born with the most devastating genetic conditions. - A biosketch of each of the board members is below. Katherine Wilemon Founder and Chief Executive Officer, is an individual with FH. Katherine Wilemon conceived the FH Foundation as a partnership between physician scientists and those living with FH. Katherine's own journey to receive an accurate diagnosis and appropriate care for FH urged her to devote her life to this cause. After having a heart attack at 38, Katherine set out to raise awareness of FH and save lives. As noted above, Katherine Wilemon works directly with the head of genomics at the CDC. Since 2016 Katherine Wilemon has been a member of the National Academies - Genomic Public Health Action Collaborative Working Group. In 2017, she was asked to lead the cascade screening work group focused on all three Tier 1 Applications- HBOC, Lynch, and FH William A. Neal, MD Chairman of the Board William A. Neal, MD, a native of Huntington, WV, earned his undergraduate degree from Xavier University in Cincinnati, Ohio in 1962. His medical degree was awarded by West Virginia University in 1966, where he was the first recipient of the Edward J. Van Liere Award for medical student research. From 1985 to 1998 he served as Chair of the WVU Department of Pediatrics. Dr. Neal was instrumental in the conceptualization and development of WVU Children's Hospital and served as its first Medical Director. Dr. Neal is currently James H. Walker Professor of Preventive Cardiology in the Department of Pediatrics at West Virginia University. Upon graduation from medical school, Dr. Neal continued training as a rotating intern at the Milwaukee County General Hospital, Marquette University, 1966-'67. He was then commissioned in the U.S. Navy, where after graduation from the Naval Aerospace Medical Institute, he was assigned as Flight Surgeon aboard the USS Constellation. He made two combat tours to Vietnam. Postgraduate education in his chosen specialty of pediatric cardiology was accomplished at the University of Minnesota 1970-74. Dr. Neal then joined the faculty at WVU. He was awarded Emeritus status July 1, 2014 after forty years of service to the University and State. Neal's clinical career at WVU focused on development and regionalization of newborn intensive care, establishment of a statewide system of outreach clinics in pediatric cardiology and founding of the Coronary Artery Risk Detection in Appalachian Communities (CARDIAC) Project. CARDIAC has provided risk factor surveillance, intervention, and research for over 150,000 school-age children from every West Virginia Community over the past sixteen years. As the largest comprehensive accumulation of health status data on children in the nation it has strongly influenced policy guidelines of the American Academy of Pediatrics regarding blood cholesterol screening and treatment for children at risk for premature heart disease and diabetes. He currently serves on the Board of Directors of the Familial Hypercholesterolemia Foundation. He was named Distinguished Alumnus of the WVU School of Medici
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt3Allison serves the FH Foundation as a volunteer FH Advocate for Awareness and as a Board Member. She earned her BS in Commerce from the University of Virginia, and her MBA from the University of Texas at Austin. She currently works as the director of recruitment and marketing for the Daytime MBA and MMS programs at Duke Fuqua School of business. Joshua Knowles, MD, PhD Chief Medical Advisor Dr. Joshua W. Knowles is an Attending Physician in the Stanford Center for Inherited Cardiovascular Disease where he treats patients with Familial Hypercholesterolemia (FH). He has had a longstanding interest in the genetic (inherited) basis of cardiovascular disease and in particular the use modern genetic techniques to improve its ability to diagnose and treat patients at risk of heart disease. Josh completed his MD-PhD at the University of North Carolina at Chapel Hill where he worked in the lab of Prof. Nobuyo Maeda and Nobel Laureate Oliver Smithies studying animal models of atherosclerosis and lipid metabolism. He then completed his Internal Medicine residency and Cardiovascular Medicine fellowship training at Stanford University working in the lab of Dr. Thomas Quertermous. He has published over 35 papers focused on heart disease with research projects currently funded by the National Institutes of Health and the American Heart Association. He is particularly excited to be involved with the FH Foundation in their mission to increase awareness of this condition, identify patients with FH, encourage screening of family members of those with FH and facilitate treatment of FH patients. He views FH as a "winnable battle" because once FH is identified, it can usually be treated quite effectively. Daniel J. Rader, MD Chief Scientific Advisor Dr. Rader is the Seymour Gray Professor of Molecular Medicine at the Perelman School of Medicine at the University of Pennsylvania. He serves as the Chair of the Department of Genetics as well as the Chief of the Division of Translational Medicine and Human Genetics in the Department of Medicine. He is also Associate Director of Penn's Institute for Translational Medicine and Therapeutics. Dr. Rader's research focuses on the human genetics and functional genomics of lipoprotein metabolism and atherosclerosis, as well as the translational implications for novel therapeutic approaches. He led the scientific and clinical development of a first-in-class inhibitor of microsomal transfer protein for the treatment of severe hypercholesterolemia, which is now on the market. He has a particular interest in HDL metabolism and function, and novel approaches to targeting HDL metabolism and reverse cholesterol transport in the treatment, prevention, and regression of atherosclerosis. Dr. Rader trained in internal medicine at Yale-New Haven Hospital and in human genetics and physiology of lipoprotein metabolism at the National Institutes of Health. He has been on the Penn faculty since 1994. Dr. Rader is a member of the American Society of Clinical Investigation, the Association of American Physicians, and the Institute of Medicine of the National Academy of Sciences. He is a recipient of several awards including the Clinical Research Award from the American Heart Association. Michael Shapiro, DO Board Member Dr. Shapiro is director of OHSU's Cardiac MRI an CT program and is board certified in Cardiology, Cardiovascular CT (imaging), and Lipidology (cholesterol). His clinical expertise includes: - Genetic and acquired disorders of cholesterol and triglycerides - Atherosclerosis Imaging (Non-invasive imaging of the heart arteries) - Genetic predisposition to early heart attacks - Cardiovascular risk assessment in apparently healthy individuals - Clinical trials of new cholesterol and triglyceride lowering drugs Maria Sophocles, MD Board Member Dr. Maria Sophocles is a Board-certified OB/GYN who has been in private practice since 1995. Dr. Sophocles completed her residency training at Johns Hopkins Hospital in Baltimor
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Displayed year

2017 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$7,642,582
Liabilities
$180,835
Net assets
$7,461,747
Revenue
$5,690,012
Expenses
$5,037,196
Net income
$652,816
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$7.35$2.08$5.27$8.89$7.84$1.05
2023Detailed filing. Detailed filing data is available for this year.$5.31$1.13$4.18$6.54$6.36$0.17
2022Detailed filing. Detailed filing data is available for this year.$4.49$0.55$3.93$2.81$4.73$1.92
2021Detailed filing. Detailed filing data is available for this year.$6.40$0.38$6.02$4.76$2.86$1.90
2020Detailed filing. Detailed filing data is available for this year.$4.37$0.31$4.06$3.76$3.12$0.64
2019Detailed filing. Detailed filing data is available for this year.$3.59$0.22$3.37$3.46$5.01$1.55
2018Detailed filing. Detailed filing data is available for this year.$5.28$0.46$4.82$3.10$5.69$2.59
2017Detailed filing. Detailed filing data is available for this year.$7.64$0.18$7.46$5.69$5.04$0.65
2016Detailed filing. Detailed filing data is available for this year.$6.97$0.18$6.79$6.16$4.09$2.07
2015Detailed filing. Detailed filing data is available for this year.$4.84$0.12$4.72$4.35$3.18$1.17
2014Detailed filing. Detailed filing data is available for this year.$3.58$0.03$3.55$3.10$1.45$1.65
2013Detailed filing. Detailed filing data is available for this year.$0.37$0.01$0.36$0.76$0.85$0.08
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.44$0.00$0.44$0.14