Dec. 15, 2015

Progress Toward a Life Free of Lupus: 2015 Top Ten Achievements in Research, Education and Advocacy

 

The Lupus Foundation of America continued to make important advances during 2015 toward our vision of a life free of lupus for millions of people around the world. We surpassed strategic milestones on the path toward reducing time to disease diagnosis, ensuring that people with lupus have an arsenal of safe and effective treatments, and expanding direct services and access to treatments and care. Here are our top 10 key achievements of the year:

LIFELINE GRANT Program™ Keeps Lupus Research on Track

Our LIFELINE Grant Program enabled three lupus researchers, who experienced the results of NIH funding cutbacks, to continue their critically important studies while they prepared to resubmit their grants to the National Institutes of Health (NIH). The program was a great success as two researchers went on to secure more than three million dollars from the NIH to support their work. 

Foundation Receives Multi-million Dollar Federal Grant 

The Foundation was awarded a multi-million dollar grant by the U.S. Centers for Disease Control and Prevention (CDC) to improve early diagnosis of lupus and provide services to improve the quality of life for people with lupus. The Foundation will produce a national awareness campaign, develop new sustainable support resources, and expand partnerships with health care providers among others.

KNOW LUPUS℠ Campaign Engaged 26 Celebrities to Create Awareness

In May we launched a national, multi-media campaign to encourage the public to KNOW LUPUS in order to create a future with NO LUPUS. The KNOW LUPUS campaign features people with lupus as well as celebrity supporters including Whoopi Goldberg, Ian Harding, Tim Gunn, Susan Lucci and the cast of Marvel’s Agents of S.H.I.E.L.D. in a series of public service announcements that were broadcast on TV stations across the country.

First-ever Public Health Agenda on Lupus

We partnered with the CDC and the National Association of Chronic Disease Directors (NACDD) to develop the first-ever National Public Health Agenda for Lupus. The report provides a road map for public health priorities, strategies and recommendations for future lupus programs and research.

Federal Reports Focus on Lupus

The Foundation worked with our nation’s leaders to ensure lupus was included in the 2015 Kelly Report on Health Disparities in America released by the Congressional Black Caucus Health Braintrust and stimulated a new Action Plan for Lupus Research report soon to be published by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

Launch of First National Needs Assessment to Advance Diagnosis, Treatment and Services

The first national comprehensive lupus needs survey among patients, caregivers and physicians was designed to better understand the pathway to diagnosis, obtain views about current lupus treatments and provide recommendations on programs and services to help support people with lupus. The data will guide the Foundation as we develop future programs and services.

Lupus Foundation of America Activists Rally to Help Secure Passage of 21st Century Cures Legislation

Hundreds of lupus activists participated in the Foundation’s National Lupus Advocacy Summit and rallied support in the U.S. House of Representatives to help pass the 21st Century Cures legislation that will help to remove barriers to increased research collaboration. 

Addressing Unmet Needs in Lupus Research

The Foundation funded important peer-reviewed lupus research studies into the therapeutic use of adult stem cells, understanding the environmental triggers for lupus and improving pediatric health outcomes.  The Foundation also granted career development awards and student fellowships for studies in pediatrics, basic research, disease assessment and biomarkers.

Development of LFA-REAL System™ Advances toward Testing and FDA Approval

Results from exploratory research of the LFA-REAL System™ were published in Lupus Science & Medicine™. Multi-center studies are planned for 2016.  The LFA-REAL System is being designed to provide more reliable data to help doctors measure disease activity in people with lupus in clinical practice and in clinical trials.

Public Rallies to Raise Funds to Solve the Cruel Mystery of Lupus

The Walk to End Lupus Now™ is the World’s Largest Lupus Walk℠ program, with more than 70,000 participants in more than 60 cities in the United States. The walk’s new rallying cry, Discover Your Power℠ generated great enthusiasm among participants who helped raise more than $5 million for lupus research and education programs across the nation.