Chair of the Board

Kevin Cheung

Vice Chair of the Board Keith Lanier

Treasurer John Aton

Secretary

Burnis J. Chitwood

Board Members Gilda S. Baldwin

Richard Brasington, MD Esam R. El-Qunni

Arica Evans Alfred Kim, MD, Ph.D.

Judy Miniace Mark F. Mueller

Azhar Shah Barbara Langsam Shuman

Reema Syed, MD Susan Vise

President & CEO

Amy Ondr

Director of Programs & Advocacy LaKricia Cox

Events & Operations

Manager Beka Rich

Community Outreach

Coordinator Daphne Reitz

Accountant

Shannaya McFarland

Kevin Cheung Chair of the Board

Amy Ondr President & CEO

Dear Friends & Supporters: On behalf of the Board of Directors and staff of the Lupus Foundation of America, Heartland Chapter, we would like to thank our many donors, volunteers, and lupus warriors for your support and generosity this past year. We are pleased to share this Annual Report with you, highlighting our past accomplishments and plans for the future. In May of 2013, our board approved a new strategic plan which sets the course for the future of our chapter. The planning process involved an assessment of the chapter’s current position, including its strengths and weaknesses. A committee of board members, staff and community volunteers developed the plan which spans five years through the end of 2018. To achieve success over the course of this strategic plan, we will focus our work on the following goals: Mission Critical Goals

Significantly increase the number of people served through high quality programs of education and support that improve the quality of life for all people affected by lupus.

Create greater awareness of lupus, reach out to more people living with the disease, and be a strong advocate on their behalf.

Advance the science and medicine of lupus. Operational Goals

Achieve financial stability through diversified and sustainable resources.

Develop, train, and cultivate an effective and vested board of directors and volunteer corps.

The plan outlines the path forward. The successful implementation of the plan relies on the skills, determination, and commitment of our board, staff, volunteers, medical community, and our donors. Together we can solve the cruel mystery of lupus and put an end to its devastating impact. With Thanks, Kevin Cheung Amy Ondr Chair of the Board President & CEO

The Lupus Foundation of America, Heartland Chapter provides caring support to people living with lupus. We work with health professionals and volunteers to provide information and programs to ensure people with lupus and their families get the information and help they need to improve their quality of life. In 2013 we saw a significant increase in the number of people we serve through our programs of education and support. Monthly Lupus Support Groups—Support groups are led by trained professionals and volunteers who understand the issues that challenge a person with lupus. Support groups are held in St. Louis, Kansas City, and Springfield, MO. Summer Jam Youth Retreat—Annual summer camp that is free of charge for girls 9 to 19 years of age with lupus. In addition to traditional camp activities, campers participate in low-impact exercises for healthy bodies and learn coping skills through support groups led by professional counselors. Most importantly, these young women make new friends and learn that they are not alone. Behind the Mask Lupus Education Conference—This half day educational program includes recent topics on lupus research, new treatments, coping skills, pain and disease management, diagnosis of lupus and more. Conferences are held in St. Louis and Kansas City. Living Well with Lupus—We launched a new four-part series called “Living Well with Lupus” designed to help people living with lupus find the support and information they need to live well with the disease. Lupus Teleconferences—Teleconferences focus on specific topics of interest with presenters from across the United States. Participants are able to call a toll free number and listen and participate in the program from the comfort of their own home.

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It is a harsh fact of life that lack of money often stands in the way of curing sickness and relieving suffering. Thanks to our generous donors, who bring new money to the fight, the Lupus Foundation of America rallies experts and deploys resources so that society can make progress toward solving the cruel mystery of lupus and ending its devastating impact. The Walk to End Lupus Now™ is our largest fundraising event and is held annually in St. Louis and Kansas City. This event brings together lupus warriors, family, friends, and supporters to raise funds and awareness of lupus. Our first annual Purple Ball was held in March 2013 and was a huge success. The gala included a silent and live auction and the presentation of the Lupus Leadership Awards to Terry L. Moore, MD, the Missouri Foundation for Health, and Martin Casas. Biking enthusiasts supported the Heartland Chapter at our annual WolfRide GrandFondo in Columbia, Illinois. This long-distance cycling event is family friendly with 21, 56, or 112-mile routes. The WolfRide has been called “the best organized charity cycling event in the region.” The Heartland Chapter is a proud member of the United Way of Greater St. Louis, Community Health Charities, and the Combined Federal Campaign. We also receive funding from a number of foundations and corporations, including a generous grant from the Missouri Foundation for Health. We are grateful to the many companies, groups, and individuals who support our mission. To make a donation go to lfaheartland.org or call 314-644-2222 or toll free at 800-958-7876. Mail donations to: Lupus Foundation of America, Heartland Chapter, 4640 Shenandoah Ave., St. Louis, MO 63110

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The Lupus Foundation of America Heartland Chapter utilizes a grassroots advocacy program to help lupus advocates educate elected officials on issues important to people living with lupus. In March of 2013, these advocates made their voices heard at our Lupus Public Rally and Advocacy Day in Jefferson City, MO. We heard from speakers about the importance of Medicaid expansion and the impact it will have on people living with lupus in Missouri. Advocates also shared their lupus story with their local elected officials at the State Capitol. Put On Purple Day is held during May Lupus Awareness Month. Lupus advocates wear purple and tell people why. Our friends, supporters and even the local media wore purple and helped us raise awareness of lupus. On World Lupus Day, our lupus advocates were out on Maryland Plaza in St. Louis asking for signatures on a petition to expand lupus funding at the National Institute of Health. The petitions were delivered in person to members of Congress by our CEO Amy Ondr and Director of Programs and Advocacy LaKricia Cox at the National Lupus Advocacy Summit in Washington D.C. The Heartland Chapter debuted a powerful redesigned website in 2013, www.lfaheartland.org. The website has a new Q&A format and information grouped to meet specific audience needs. We also continue to expand our online presence through social media, nearly doubling our Facebook fans last year. Google Zeitgest examines the top Internet searched trends and terms across the globe. In 2013, lupus was one of the top search terms within “health issues” and “symptoms” and “What is lupus?” was the #8 most searched “what is” topic on the Internet. In 2013 we celebrated the tenth anniversary of Lupus Now®, the first national magazine devoted to lupus that reached more than 100,000 individuals with lupus, their families, health professionals, and members of the science press.

The Lupus Foundation of America continues to expand our efforts to improve the quality of life for all people affected by lupus. Our accomplishments expanded scientific understanding of lupus and provided tools that are helping to develop a full arsenal of new treatments. We take great pride in the following accomplishments: We continue to help build an arsenal of new treatments for lupus by implementing recommendations of the Lewin Report, a report we commissioned that was the first to detail obstacles in lupus drug development.

The Lupus Foundation of America Professional Online Instrument Training Program (LFA-POINT™), our online portal that trains health professionals on instruments used in clinical studies, surpassed a total of 3,500 users from 53 countries. The National Institutes of Health began to use the portal, demonstrating its value to advance lupus clinical research.

As part of our national research effort, we advocated for expanded public and private investment in lupus research. Important advances were made in basic and clinical research which will help doctors better manage lupus.

Investigators discovered detailed evidence that the signaling process used by cells to communicate with each other was abnormal in lupus.

Researchers also learned that patients with lupus-related kidney disease need at least four years of treatment after initial improvement to prevent future flares.

We joined with other lupus organizations to award the Lupus Insight Prize which annually honors an outstanding lupus investigator with a documented record of creativity, innovation, and productivity.

We are the trusted source for the latest medical information on lupus.

In 2013, we joined forces with medical publisher BMJ to establish Lupus Science & Medicine™, the first open access peer-reviewed medical journal dedicated to lupus.

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Statement of Financial Position September 30, 2013 ASSETS Cash and Investments $253,992 Pledges Receivable $ 13,800 Accounts Receivable $ 3,118 Prepaid Expenses $ 18,543 Property and Equipment $ 14,676 Other Assets $ 1,264 Total Assets $305,393 LIABILITIES Accounts Payable & Accrued Expenses $ 48,223 Deferred Revenue $ 3,754 Total Liabilities $ 51,977 NET ASSETS Unrestricted $212,490 Temporarily Restricted $ 40,926 Total Net Assets $253,416 TOTAL LIABILITIES & NET ASSETS $305,393

Statement of Activities September 30, 2013 REVENUE Federated Campaigns $ 71,976 Fundraising Events $192,547 All Other Contributions $214,690 Investment Income $ 485 Total Revenue $479,698 EXPENSES Program Services $300,477 Management & General $ 16,004 Fundraising $ 59,876 Total Expenses $376,357 REVENUE LESS EXPENSE $103,341 A complete copy of the Lupus Foundation of America, Heartland Chapter’s financial statements is available upon request.

St. Louis

Emerson Kansas City

Drury Hotels

Event Sponsors

McCormack Baron Salazar

Health Care Family Credit Union

MSG Jewelers

Ameren VIP Table Sponsors

Barbara Langsam Shuman & Michael Shuman

Keystone IT Consulting

St. Louis College of Pharmacy

Bank of America Table Sponsors

US Bank

Judy Miniace

Burnis Chitwood

John & Elizabeth Aton

Performance Food Service

Bank of America

Big Shark Bicycle Company

Keystone IT Consulting

Glaxo SmithKline

Pfizer

Enterprise Holdings Foundation

Cardinals Care

Genentech

Boeing Employees Community Fund

United Way of Greater St. Louis

Anonymous

St. Louis Rams Foundation

Missouri Foundation for Health

KMOV News 4

Edward & Thea Lawton Foundation

Eli Lilly

The Lupus Foundation of America, Heartland Chapter is grateful for the support of our many generous donors. Below is a listing of our major event sponsors, foundation and corporate donors for fiscal year 2012-13.

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