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LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER 2013–2014 ANNUAL REPORT LEADING THE FIGHT TO END LUPUS ... THROUGH RESEARCH THROUGH ADVOCACY THROUGH EDUCATION THROUGH AWARENESS

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Page 1: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER2013–2014 ANNUAL REPORT

LEADINGTHE FIGHT

to end

lupus...

THROUGH RESEARCH

THROUGH ADVOCACY

THROUGH EDUCATION

THROUGH AWARENESS

Page 2: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

One Mission. One Vision. For You.

Page 3: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER2013–2014 ANNUAL REPORT

One Mission. One Vision. For You.

Clockwise from top left: Patients from 2014 Cleveland/Akron Walk to End Lupus Now™; Patients from 2014 Cincinnati Walk to End Lupus Now™; Patients from 2014 Columbus Walk to End Lupus Now™.

Page 4: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

The Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality of life for all people affected by this cruel and mysterious disease. Lupus is a complex and devastating illness. It requires comprehensive medical care and intense support from multiple resources for patients. We remain steadfast in our commitment to lupus patients and finding a cause and cure for this disease.

We are making progress! The LFA, GOC works with our national office in Washington D.C. on initiatives to accelerate lupus clinical trials and bring us closer to finding a cause and cure for lupus. Last year, our national office spearheaded development of the Lupus Foundation of America-Rapid Evaluation of Activity in Lupus (LFA-REAL™), a cutting-edge tool to assess the level of an individual’s disease activity.

The world’s first lupus-specific online open access journal, Lupus Science and Medicine™, was launched in response to the need for a barrier-free forum for publication of groundbreaking studies in lupus and to provide a central point for dissemination of lupus research findings.

We are a strong voice for people with lupus. We reach out daily to our patients through multiple avenues and are singular in our focus to spread lupus awareness. Over the past year, our social media efforts have doubled in both their reach and in user engagement. We have also continued building relationships with local celebrities in order to keep lupus in the forefront of the public’s consciousness. In June 2013, the LFA, GOC participated in advocacy week in Washington D.C. in order to elevate lupus on the national health agenda and keep pressure on policy makers and elected officials to help end lupus.

People with lupus are at the heart of everything we do! This past year we offered more than 320 support groups with over 1,030 participants throughout the state of Ohio. We also introduced the first mobile lupus app to help patients and their caregivers manage their disease. We celebrated the 10th anniversary of Lupus Now® magazine, the first and only national magazine specifically for people impacted by lupus and reintroduced our Chapter’s triennial magazine, AWARE. All of these efforts help patients get answers to their questions and manage the complexities of living with lupus. Most importantly, it helps them know they are not alone.

We were also honored with the prestigious National Lupus Education & Support Services Award for our New Patient Education Program. This award, given by the Lupus Foundation of America national office in Washington D.C., is presented to an innovative chapter program that improves the quality of life for people affected by lupus by providing evidence-based education and/or support.

The challenges of this disease are many, but they do not daunt us. In fact, they motivate us to work even harder! With your continued support, we are determined to solve the cruel mystery of lupus.

Sincerely,

Suzanne Tierney,President & CEO Lupus Foundation of America, Greater Ohio Chapter

LETTER FROm ThE President & Ceo

Page 5: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

LUPUS: AN URGENT NATIONAL PUbLIC HEALTH ISSUE Every day, lupus exacts a brutal toll on the lives of people affected by this misunderstood and unpredictable disease — physically, emotionally and financially. It ravages different parts of the body, and has no known cause and no known cure. And while lupus can strike anyone at any time, 90 percent of people who develop lupus are young women in the prime of life. The effects of lupus and the medications used to treat the disease are devastating: disability, interruption of careers and infertility.

Lupus is serious and relentless — and so are we. People who have the disease are always under the threat of a new health crisis and must be brave in the face of what can be daunting and overwhelming. For them, we offer the best answers available, the support of caring people, and referrals to expert physicians. We are their allies in the search for a cure and in the quest for resources to fund research. We work alongside our LFA Lupus Network with lupus experts to help us identify the most pressing scientific challenges and aggressively pursue and fund a research agenda to find the answers to the most important and challenging questions in lupus.

We are determined to bring an end to lupus while providing answers, support and hope to all impacted by lupus. We advance our mission through a comprehensive program of research, advocacy, education and awareness.

Page 6: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

Since 2009, direct grant programs, combined with advocacy efforts, have led to a total investment of $37 million in new dollars for lupus research. Through our national office in Washington D.C., the research program is focused on bringing down barriers to the development of new treatments for lupus. This includes the first-ever global definition of a lupus flare for use in clinical trials and practice, spearheading an initiative to evaluate data from past lupus clinical trials to improve how future trials are conducted and, creating an innovative online tool to provide training to clinical investigators on the instruments used in global lupus clinical trials to improve how data is collected and analyzed. All of these initiatives help bring us closer to achieving our goal of having an arsenal of treatments for lupus and the tools and resources to achieve the best possible quality of life for people with lupus.

leading the fight to end lupus thRough RESEARCH.

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2013 - 2014 ANNUAL REPORT | 5

DEvELOPMENT OF A CUTTING-EDGE DISEASE MANAGEMENT TOOL

Ten percent of our Chapter’s revenues go directly to a lupus research pool through our national office in Washington D.C. This past year, those monies helped take another monumental step forward with the development of the Lupus Foundation of America Rapid Evaluation of Activity in Lupus (LFA, REAL™). LFA, REAL™ is a first of its kind system that will allow people with lupus and their rheumatologists to assess, evaluate treatment decisions and improve data collection in clinical trials testing new lupus treatments.

The LFA, REAL™ is the brainchild of the Foundation’s medical director and researcher at the Oklahoma Medical Research Foundation, Joan T. Merrill, MD and Columbia University researcher and physician, Anca D. Askanase, MD, MPH. Realizing there was a need for a unified and simplified tool to assess disease activity, the LFA, REAL™ was created.

The tool has two parts that the clinician and the patient each complete. Its purpose is to monitor disease activity over time, encourage treatment decisions are made together and reduce unnecessary treatment and costs. The LFA, REAL™ will be the only tool for lupus to go through a qualification and approval process by the Food and Drug Administration (FDA) for use in lupus clinical trials. This will result in greater consistency in data from clinical trials of potential new lupus therapies, so that the trials can be completed more successfully, allowing new medicines to get into the hands of patients and physicians faster.

MORE RESEARCH SUCCESS:

- Joined forces with medical publisher British Medical Journal (BMJ) to establish Lupus Science and Medicine™, the first open-access peer reviewed medical journal dedicated to lupus.

- Presented in-depth analyses of additional data from the Lupus Foundation of America Collective Data Analysis Initiative (LFA CDAI), which has provided valuable insight into the impact of medicines people with lupus take during lupus clinical trials.

- Funded new research studies to advance the science and medicine of lupus. Since its inception, the Foundation has supported the efforts of more than 400 investigators at 100 institutions across the United States including Children’s Hospital in Cincinnati and The Ohio State University.

“The LFA-REAL™ system is unique because, for the first time, a tool is being developed that will capture the patient voice, address quality of life, track disease activity AND work in companion with the rheumatologists’ assessment. It ensures that the patient is engaged in the treatment and decision making process alongside their physician.”

AnCA d. AskAnAse, Md, MPHCOLUmbIA UNIvERsITy mEDICAL sChOOL

Page 8: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

neuRopsychiatRic lupus Mark W. DiFrancescO, phDCincinnati Children’s HospitalMedical Center Cincinnati, OH

Imaging the Blood-Brain Barrier in Childhood-Onset Neuropsychiatric Lupus

Presented in memory of Kassie McMullin biglow and made possible in part by funds provided by the Lupus Foundation of America Greater Ohio Chapter.

adult stem cells laurence M. MOrel, phDUniversity of Florida Collegeof Medicine Gainesville, FL

Genetic Regulation of Stem Cell Dysfunction in a Mouse Model of Lupus

This grant is in honor of the Cooper Family Foundation and is provided through a trust created in memory of Stephen and Catherine Pida.

Michael JOn Barlin peDiatric lupus research prOgraM:

lisaBeth V. scalzi, MD, MsPennsylvania State University Milton S. Hershey Medical Center Hershey, PA

Impact of Social Media and Online Support for Self-Management in Adolescents with Lupus

This is the Lucy vodden Research Grant Award, which was established in memory of Lucy vodden by the Lupus Foundation of America and Julian Lennon. This grant is made possible in part by funds provided by the Lupus Foundation of America Philadelphia Tri-State Chapter.

career DeVelOpMent aWarD:

canDace h. FelDMan, MD, Mphbrigham and Women’s Hospital boston, MA

Comparative Risks of Infections in Lupus Patients on Immunosuppressants

Created to help fellows interested in pursuing lupus research meet their financial needs.

bRingingdownthebARRIERS™

NATIONAL ReSeARCH PROGRAM GRANTeeS & INITIATIveS

Page 9: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

gina M. Finzi MeMOrial stuDent suMMer FellOWship prOgraM:

elisaBeth aDkinsThe Jackson Laboratorybar Harbor, METhe Sackler School of Graduate biomedical Sciences at Tufts Universityboston, MA

Origins of Follicular T cells and Interleukin 21 Signaling in Systemic Lupus erythematosus

steFan M. gYslerYale University School of MedicineNew Haven, CT

Role of microRNAs in Trophoblast Responses to Antiphospholipid Antibodies

Danusha JeBanesanUniversity of Toronto and The Hospital for Sick ChildrenToronto, ON, Canada

Multiple Targets of Maternal Autoantibodies in Lupus Pregnancies

hans kiMState University of New York UpstateMedical UniversitySyracuse, NY

Nuclear Magnetic Resonance-Based Metabolomic Study for Systemic Lupus erythematosus

MOrgan MOrelliAllegheny-Singer Research InstitutePittsburgh, PA

Association of PC4d with Thrombosis and Cardiovascular Disease in Systemic Lupus erythematosus

lFa cOllectiVe Data analYsisinitiatiVe (cDai):

MiMi kiM, scDAlbert Einstein College of Medicine of Yeshiva University and Montefiore Medical Center bronx, NY

An Integrated Analysis of Data from Placebo Groups Participation in Multi-Center Clinical Trials for Lupus

lupus insight prize:

Mark J. shlOMchik, MD, phDUniversity of Pittsburgh Pittsburgh, PA

Dr. Shlomchik investigated the connection between the death of neutrophils, the body’s most abundant white blood cells, and lupus.

lFa rapiD eValuatiOn OF actiVitY in lupus (lFa-real™):

anca D. askanase, MD, MphColumbia University New York, NY

Diane l. kaMen, MD, MscrMedical University of South CarolinaCharleston, SC

JOan t. Merrill, MDOklahoma Medical Research FoundationOklahoma City, OK

s. saM liM, MD, MphEmory UniversityAtlanta, GA

2013 - 2014 ANNUAL REPORT | 7

Page 10: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

leading the fight to end lupus thRough ADvOCACY.

Combined with the efforts of our National Office in Washington D.C., the Lupus Foundation of America, Greater Ohio Chapter is determined to make lupus a national health care priority. We fight to improve access to health care and expand funding for lupus education and research initiatives so we can find better treatments and get the answers we need to solve the cruel mystery of lupus.

Page 11: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

LObbIED CONGRESS FOR LUPUS RESEARCH AND EDUCATION

The Lupus Foundation of America, Greater Ohio Chapter worked tirelessly in 2013 and 2014 to advocate for our cause throughout the state of Ohio.

Lupus Awareness Month, held in May, was recognized throughout the state. On May 16th, 2014 lupus patients and their friends and family participated in POP (Put On Purple) Day for lupus. Together, we made a statement to Ohio that we are here and we are fighting to find a cause and a cure for lupus. Tower City, the tallest and most recognized building in downtown Cleveland, was lit purple for lupus awareness. The Cleveland Indians, our major league baseball team, also held a lupus awareness night on our behalf. In addition, we were honored to receive proclamations from the cities of Wilmington, Cincinnati and Forest Park, officially recognizing the month of May in Ohio as Lupus Awareness Month.

During the Lupus Foundation of America’s National Advocacy Lupus Summit, held in June of 2013, three patients and two of our staff members traveled to Washington D.C., along with 250 other activists from 31 states. Together, they met with members of Congress regarding the countless and sometimes devastating ways lupus has affected them and their families. Our group was given an agenda to speak with state legislators regarding third tier medications and co-pay assistance.

Our national and local offices, including the LFA, GOC, Inc. are dedicated to continuing our advocacy efforts and will keep the pressure on our nation’s leaders on Capitol Hill and in our own state house in Columbus.

MORE ADvOCACY SUCCESS:

- Our own President & CEO, Suzanne Tierney, participated in the Department of Defense Peer Reviewed Medical Research Program, which awarded $1.6 million to two biotechnology companies to develop potential life-saving treatments for lupus. Another $3.4 million in grants was provided to three research institutions to learn more about lupus.

- Our National office secured an additional $2 million for a total of $6.5 million for The Lupus Initiative, which launched in 2013 to train more doctors on recognizing the signs and symptoms of lupus to improve early diagnosis and treatment.

“The National Lupus Advocacy summit makes an impact for the lupus community to our federal government officials. It is an empowering day where patients from across our nation voice the need for government funding for lupus research. Watching our fearless lupus activists take a stand and educate our elected officials on lupus was an inspiration.”

LesLie tierney, rnvP OF OPERATIONs & PATIENT NAvIGATORLFA, GOC

2013 - 2014 ANNUAL REPORT | 9

Page 12: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

leading the fight to end lupus thRough EDUCATION.

Whether an individual has had lupus for six weeks or six years, we know that a lupus diagnosis can be overwhelming, confusing and at times frightening. We are here to listen and to make sure that everyone gets the answers and support they need. Our work has earned public confidence, and our advice is credible and authoritative. We have years of experience and deep roots with leading researchers and medical specialists. We collaborate with top lupus experts to provide the latest information about developments in lupus educationand treatment.

Page 13: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

MORE EDUCATION SUCCESS:

- Participated in our Help Us Solve the Cruel Mystery National Tour, which featured a 45 foot bus with interactive exhibits designed to showcase how lupus impacts the daily lives of individuals and their families. The tour included a patient education program and reached over 90 million people through media and impressions generated during its national tour.

- Celebrated the tenth anniversary of Lupus Now®, the only national magazine exclusively for people with lupus, their caregivers and health care professionals.

PROvIDING CARING SUPPORT AND PROGRAMS FOR LUPUS PATIENTS THROUGHOUT OHIO

The Lupus Foundation of America, Greater Ohio Chapter navigated a busy year filled with new challenges and additional programming in order to meet the needs of our many constituents.

We incorporated a new education summit in Columbus, increasing our statewide total to four annual lupus summits. We also added a ten step program and two teleconference groups for a total of eleven teleconference events. Three new support groups were formed in order to further meet our constituents’ needs. In total, we offered over 320 support groups with over 1,030 participants throughout the state of Ohio.

Most notably, we added two New Patient Education classes in Dayton and Toledo. These classes, in addition to our already established New Patient Education Programs in Cleveland, Columbus and Cincinnati, provide newly diagnosed lupus patients and their families with information about lupus, and about how to live well with the diagnosis. We were also honored with the prestigious National Lupus Education & Support Services Award. This award, given by the Lupus Foundation of America national office in Washington D.C., is presented to an innovative chapter program that improves the quality of life for people affected by lupus by providing evidence-based education and/or support.

“I am so proud of my chapter. To be forerunners in providing new and improved programs for patients, to provide hope and inspiration and to empower patients to find a better quality of life, it is an accomplishment of which I am unbelievably proud.”

suzAnne tierneyPREsIDENT & CEOLFA, GOC

2013 - 2014 ANNUAL REPORT | 11

Page 14: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

We are committed to bringing lupus to the forefront of the public’s consciousness, so that it can receive the attention and resources needed to find its causes and cures. Our national office in Washington D.C. works with international celebrities such as Julian Lennon, Nick Cannon, Ian Harding and Olympic soccer star, Shannon boxx, to help shine a light on lupus. The LFA, GOC brings the awareness down to the local level by working closely with local celebrities like radio host and media personality, Sam Sylk, former NFL quarterback, bernie Kosar, Fox8 news anchor, Kristi Capel, recording artist, Mindy Callahan, Senator Sandra Williams and WKNR-AM 850 ESPN morning show host, Tony Rizzo. We are grateful for their support and will continue to network throughout the state of Ohio to build relationships with influential personalities who can help us increase awareness of lupus.

leading the fight to end lupus thRough AWARENESS.

Page 15: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

SHINING A LIGHT ON LUPUS

Our work with statewide celebrities is only one example of how we are raising awareness and shining a light on lupus. This past year, we diligently focused on increasing lupus awareness through social media. between 2013 and 2014, we increased our daily Facebook total reach by 109.22%, our daily page user engagement by 206.90% and our new daily page likes by 58.1%. For Twitter in 2013-2014, we increased our new followers by 242.97%. Instagram received over 2,140 likes and 79 comments.

The LFA, GOC was also on the cutting edge of technology when we introduced the first mobile lupus app for patients and caregivers. The Lupus Ohio App allows patients to find nearby support groups and area programs. It also lists event information and provides a format to list all medications and doctors’ names so that patients are able to keep track of this information. The app can be found on the Apple Store and Google Play. Finally, we published 12 monthly eNewsletters which reached over 29,000 people. In addition, we reintroduced our triennial chapter magazine, AWARE and continued our distribution of Lupus Now®, the only national magazine devoted to addressing the complexities of living with lupus. We also issued over 200 press releases, 100 public service announcements, took part in; nine radio interviews, 20 awareness events and participated in over 30 health fairs.

MORE AWARENESS SUCCESS:

- For the first time ever, our Cleveland Walk to End Lupus Now™ raised over $100,000!

- The Walk to End Lupus Now™ became the world’s largest lupus walk, with events in more than 60 communities and 70,000 participants worldwide.

“I support the efforts of the Lupus Foundation of America, Greater Ohio Chapter to fight against lupus. We can all do our part to raise awareness and help find the causes and cure for this devastating disease.”

sAM syLkmEDIA PERsONALITy AND RADIO hOsT sAm syLk RADIO

2013 - 2014 ANNUAL REPORT | 13

Opposite: Media personality, Sam Sylk (C), poses with his wife (L) and, Fox 8 news anchor, Kristi Capel (R), at the 2014 Cleveland/Akron Walk to End Lupus Now™.

Page 16: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

leading the fight to end lupus with YOU.

We thank our supporters, volunteers and

activists throughout Ohio who join with us year

after year in the fight to end lupus. Without you,

our work would not be possible. We are partners

with a shared mission to improve the quality of

life for all those affected by lupus.

Page 17: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

WAYS YOU CAN JOIN THE FIGHT

Make a secure tax deductible donation. visit www.LupusGreaterOhio.org to donate or mail your check made payable to the Lupus Foundation of America, Greater Ohio Chapter, Inc. 12930 Chippewa Rd, Suite 4, brecksville, Ohio 44141.

start a team and register for Walk to End Lupus Now™. The nation’s largest lupus walk raises money for lupus research, increases awareness of lupus and rallies public support. Register today at www.LupusGreaterOhio.org.

Volunteer. With our growing list of programs and services, we are always in need of volunteers! There are lots of ways you can donate your time to the cause. Call our office at 1 (888) NO-LUPUS for more information or fill out an application online at www.LupusGreaterOhio.org.

Become a Member. Your membership with the LFA, GOC comes with a long list of benefits aimed to help ease your lupus journey. Your membership also supports us as we fight for a cause and a cure. Find out more at www.LupusGreaterOhio.org.

remember us in your will and estate planning. To discuss options for leaving a lasting legacy, e-mail us at [email protected] or call 1 (888) NO-LUPUS.

2013 - 2014 ANNUAL REPORT | 15

Opposite (clockwise from top left): Child clings in support to lupus patient at the 2014 Cleveland/Akron Walk to End Lupus Now™; Sheila Pogue-Krabacher accepts a proclamation from city leaders in Wilmington, OH; Recording artist Mindy Callahan sings the Nathional Anthem at the 2014 Cleveland/Akron Walk to End Lupus Now™.

bottom left: (L-R) Lupus Foundation of America, Greater Ohio Chapter staff poses for a picture at the 2014 Cleveland/Akron Walk to End Lupus Now™.

Page 18: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

A complete copy of the audited financial statements is available online or upon request from the Lupus Foundation of America, Greater Ohio Chapter Office by calling 1 (888) NO-LUPUS or writing to Lupus Foundation of America, Greater Ohio Chapater, 12930 Chippewa Rd., Suite 4, brecksville, OH 44141.

financial HIGHLIGHTS

76% PROGRAm sERvICEs**

14% FUNDRAIsING

10% mANAGEmENT & GENERAL

LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER

STATEMENT OF ACTIvITIESFor the year Ended september 30, 2014

reVenue And suPPort $ 506,773

ExPENSES

Program Services 346,928

Management and General 46,947

Fundraising 64,655

totAL eXPenses 458,530

CHAnge in net Assets (48,243)

net Assets, Beginning of yeAr 90,877

net Assets, end of yeAr $ 139,120

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2013 - 2014 ANNUAL REPORT | 17

— Funding research where there is a gap in our understanding or the topic has been underfunded.

— Improving the design of lupus clinical trials so they can be completed successfully.

— Creating an online training tool for researchers on the instruments used in lupus clinical trials.

— Developing a new disease assessment and treatment management tool.

ReseaRch& scientific initiatives

The LFA, GOC contributes a portion of our revenues to the National Research Program which leads scientific initiatives to stimulate the development of new treatments, funds grants to lupus researchers and advocates for expanded public and private investment in research on lupus. We achieve this through:

— Advocating for expanded investment in lupus research.

— Advocating for increased funding for Iupus awareness and education programs.

— Ongoing outreach and education for government leaders and the public.

— Engaging the media and celebrities to shine a light on lupus.

We are focused and aggressive in our efforts to increase understanding of lupus among the public and our nation’s leaders so lupus gets the attention and resources it needs.We achieve this through:

advocacy& awaReness

— Patient education programs and support groups.

— Our on-staff RN and Patient Navigator, that provides answers and referrals.

— Health management tools and resources, including Lupus Now® magazine and AWARE, our triennial magazine.

While on the quest for treatments and cures we provide answers, support and hope to people with lupus, their families and the physicians who care for them. We achieve this through:

education & suppoRt seRvices

15%

75%

ProgrAM serViCes

10%

Page 20: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

national office Washington, DC

alaska chapteR Anchorage, AK

connecticut chapteRFarmington, CT

dc/md/va chapteRWashington, DC

floRida chapteRboynton beach, FL

geoRgia chapteRSmyrna, GA

gReateR ohio chapteRbrecksville, OH

heaRtland chapteRSt. Louis, MO

indiana chapteRIndianapolis, IN

iowa chapteRDes Moines, IA

kansas chapteRWichita, KS

lone staR chapteRHouston, Tx

memphis aRea chapteRMemphis, TN

mid-south chapteRNashville, TN

new JeRsey chapteRSpringfield, NJ

noRth caRolina chapteRCharlotte, NC

pacific noRthwest chapteRRenton, WA

philadelphia tRi-state chapteRJenkintown, PA

texas gulf coast chapteRHouston, Tx

utah chapteRSalt Lake City, UT

veRmont chapteRWaterbury, vT

wisconsin chapteRMilwaukee, WI

The Lupus Foundation of America National Network is composed of chapters, offices and support groups in communities throughout the United States. As a united force, we lead a nationwide move-ment to solve the cruel mystery of lupus and improve the quality of life for all people who suffer from its brutal impact.

nationalNETWORK

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MARIA WOYMACHAir of tHe BoArd

GEORGE SAGARIS1st ViCe President

DIANA FLEMING, MSNseCretAry

MARK WESTERtreAsurer

JEANNINE vALENTItrustee

ANDREW POSTtrustee/LegAL AdVisor

KIEYA HILLtrustee

DAWN OWEN-YOUNGtrustee

LISA SCHROEDERtrustee

bEATRICE TECtrustee

KIMbERLY KALISTAtrustee

STANLEY bALLOU, MDtrustee/MediCAL AdVisor

lfa,gocbOARD OF DIRECTORS & MANAGEMENT

2013 - 2014 ANNUAL REPORT | 19

BoArd of direCtors

SUzANNE TIERNEYPresident & Ceo

LESLIE TIERNEY, RNViCe President of oPerAtions & PAtient nAVigAtor

KATHY HOLMES ViCe President of finAnCe

MARNIE bURKEViCe President of ProgrAMs & PAtient serViCes

CHELSEA FAGAN ViCe President of CoMMuniCAtions

LfA, goC MAnAgeMent stAff

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stAn BALLou, MdChairMetroHealth Medical Center

ABBy ABeLson, MdAdvisorCleveland Clinic

HoWArd ePstein, Md AdvisorCleveland Clinic

ruLA HAJJ-ALi, MdAdvisorCleveland Clinic

trine Jorgensen, PhdAdvisorCleveland Clinic

norA singer, MdAdvisorMetroHealth Medical Center

steVen sPALding, MdAdvisorCleveland Clinic

HoWArd sMitH, MdAdvisorCleveland Clinic

VAn WArren, MdAdvisorUniversity Hospitals

medical scientific ADvISORY COUNCIL

Page 23: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality
Page 24: LEADINGThe Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) continues to be on the leading edge of the fight to end lupus. Our mission remains clear: to improve the quality

12930 Chippewa Rd., Suite 4Brecksville, OH 44141

Toll Free: 1.888.NO.LUPUSMain: 440.717.0183 Fax: 440.717.0186

LupusGreaterOhio.org