Disease, Disorders, Medical Disciplines

Lupus Foundation of America, Inc.

  • Washington, DC
  • www.lupus.org

Mission Statement

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. We envision a life free of lupus.

Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.

Main Programs

  1. Patient Education Events
  2. National Health Educator Network
  3. Caregiver Resources Program
  4. National Resource Center on Lupus
  5. Pediatric Access to Communication and Education (PACE) Initiative
Service Areas

Self-reported

National

The Foundation was established in 1977 when local lupus organizations came together to bring national attention and resources to lupus. Since that time, the LFA has evolved into the field's preeminent nonprofit lupus organization with nearly 300 chapters and support groups nationwide.

ruling year

1978

President & Chief Executive Officer since 2002

Self-reported

Sandra C. Raymond

Keywords

Self-reported

lupus, cruel mystery, research, education, support, advocacy

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Also Known As

LFA

EIN

43-1131436

 Number

3263593805

Physical Address

2121 K Street, NW Suite 200

Washington, DC 20037 4952

Contact

Cause Area (NTEE Code)

Single Organization Support (G11)

Single Organization Support (H11)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Patient Education Events

Lupus Foundation of America hosts education programs to help people with lupus and their families better understand and manage the disease. We collaborate with lupus medical experts to review research findings and produce information and programs to help people with lupus and their families to better manage the disease covering topics such as:

1. Nutrition and Diet
2. Living with Lupus
3. Lupus and Memory
4. Pediatric Lupus

We plan to host Patient Education Events in the following cities in 2017:

1. New York City, NY
2. Tampa, FL
3. Orlando, FL
4. Chicago, IL
5. Orange County, CA
6. Denver, CO
7. Seattle, WA
8. Scottsdale, AZ
9. Los Angeles, CA
10. Portland, OR
11. Boston, MA
12. San Francisco, CA
13. Fairfield, CT

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Program 2

National Health Educator Network

The Lupus Foundation of America’s National Health Educator Network , which is comprised of nurses, social workers and other allied health professionals, provides critically needed services to people affected by lupus, many of whom feel alone one and isolated without knowledge of our access to resources and information.

The LFA’s National Health Educator Network was formally established in 2006 with the goal of delivering non-medical counseling, disease education and information and physician referral. The LFA’s National Health Educators field phone calls, email and in person inquiries, primarily from people living with lupus and their caregivers. Requests for assistance is sought out by people in all stages of their journey living with the disease as well as their caregivers and loved ones.

As awareness of lupus has grown so too has the demand for this service. The LFA does not currently promote this free service, yet, we have seen continual year-on-year growth in demand. Since the Network’s inception in 2006, we have responded to over 60,000 requests for help. In the past two years alone we have experienced the greatest growth in requests for information about financial support, patient assistance programs, and medical coverage and care planning, diet, nutrition and exercise and resources to support caregivers. Spanish speaking requests for support and services has also seen a consistent increase.

When established in 2006, the role of the National Health Educator was to include local, community – based outreach, live program implementation cities across the country and partnership establishment and development. However, given the increase in demand, the health educators have had to focus their efforts solely on fielding inquiries.

Over the next two years, the LFA plans to promote this service and thus must focus on increasing the Network’s capacity. This will be done through:
• The addition of 6 health educators to work both nationally and regionally in the field conducting live programs
• Establishment of a live patient education series in the LFA’s 13 national walk cities
• Ongoing creation of new programs and services to meet the changing needs of the patient/caregiver communities
• Continual training of chapter –based and regional office health educators
• Diversification of the national and local support group offerings

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Program 3

Caregiver Resources Program

A diagnosis of lupus changes everyone’s lives, not simply the person now living with this disease. Yet, it is the caregiver – the child of a parent with lupus, the parent of a child with lupus or the spouse of an individual with lupus – who is often and mistakenly overlooked.

Lupus caregivers, much like others who care for people living with a chronic illness, often feel great stress, pressure and responsibility. They are on call 24 hours a day, 7 days a week. Many liken their role to a full time job for which they have received no formal training. Their activities can range from the mundane to the demanding, from providing transportation to a doctor’s appointment to managing loved ones’ financial, legal and insurance –related matters to becoming an advocate. However, unlike others, caregivers of an individual with lupus wake up each morning with the inability to know what each day brings, thus adding yet another more complicated layer of fear and uncertainty to their situation.

In 2012 the LFA established the Caregiver Task Force to support development of programs and services tailored to the needs of this diverse community. This Caregiver Task Force represents parents, children, spouses and partners of individuals with lupus. They serve as advisors providing us with critical insight needed to ensure that we are focusing on creating the right tools and resources. They give much needed voice and perspective to the diverse community which is essential as they manage the health of the loved one as well as their own well-being.

In 2013, the LFA began its work by developing the basic materials that address pressing and most-requested issues directly relevant to the various lupus caregiver audiences. Our goal is to continue to build depth in our content and resources while also working to diversify our programs and support groups. Additionally, the LFA will continue to leverage current resources for general caregivers applicable to lupus caregivers.

Content created will be available primarily as web content from the lupus.org website, (and in some cases in hard copy). The LFA will also create promotional information about the availability of this new information.

Additional content/programs being considered include:
• Translation of the most important caregiving content into Spanish
• Development of a transition toolkit that helps children and young adults prepare to become their own caregivers
• A caregiver journal
• A consistent caregiving blog
• Support group facilitator programs targeted specifically to caregivers

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Program 4

National Resource Center on Lupus

The National Resource Center on Lupus (NRCL) is the Lupus Foundation of America’s comprehensive gateway and central point of connection for those people whose lives are touched by lupus. The goal of this multi-dimensional center is to serve individuals with lupus, their loved ones, health care professionals, policy makers and the general public by providing accurate, evidence – based, reliable, and up-to-date information on the most relevant topics related to lupus. The LFA NRCL speaks to the diverse needs of the population and connects the lupus community to information, tools, support services and other resources with the goal of improving health and overall quality of life. Information is provided in a variety of formats (video, print and audio) and in English and Spanish with select content in Chinese.

Since inception of the idea in 2012, the LFA has been working to create basic needed and requested resources, education content, tools, programs and services. From 2015-2017, the goal is to continue to develop and expand efforts for people with lupus, caregivers and health care professionals, and most importantly, establish and promote a strong web-based presence. The ability to perform all outlined activities is dependent on available funding. The Foundation received a multi-year grant from the Center for Disease Control (CDC) that will help fulfill the start-up of this initiative, but additional investment is paramount to continue content development relative to the lupus community.

Specific examples of additions to the Center include, but are not limited to:
• Audience specific health, fitness and nutrition related videos, podcasts and content
• Access to disease management tools/programs.
• Audience specific tutorials about applying for social security disability and navigating the complex insurance environment
• Redesign of the LFA Center for Clinical Trials Education (LFA CCTE), as well as the addition of new videos, podcasts and personal experiences from individuals who have participated in clinical trials.
• Additional content to be added will address cultural barriers impacting participation.
• Redesign and launch of the LFA’s research registry.
• Implementation of an ongoing marketing strategy to support the continued growth of the registry and encourage education about and participation in lupus clinical trials.
• Web-based and teleconference support groups for people with lupus of all ages and caregivers
• Glossary of disease-related terms
• Real time calendar of LFA education programs, support services and events around the country.
• Caregiver FAQs, tip sheets, how top’s (such as what to do when your loved one enters the hospital, what questions to ask when speaking to a specialist, how to get your child school and home-based educational support)
• Links to prescription assistance and other assistance related programs and services

Specific examples of additions to the Center targeted to healthcare professionals include, but are not limited to:
• Downloadable LFA education and disease management materials for use in physician clinics
• Direct link to LFA developed CME and CEU courses; broken down via specialty and subspecialty
• LFA Professional Online Instrument Training Program (LFA POINT Program)
• Links to LFA National Research program funding opportunities and federal government funding announcements
• Treatment guidelines, professional organization websites and news about relevant meetings

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Program 5

Pediatric Access to Communication and Education (PACE) Initiative

Pediatric lupus is understudied and recognized. 15% to 20% of lupus begins in childhood prior to 18 years of age and has worse outcomes than adult lupus including:

• Children have higher damage indices than adults
• More requirement for dialysis in kids (20% vs. 6%)
• Higher renal transplant use (12% vs. 4%)
• Growth failure and delayed puberty in 15%
• 37% of kids have a major infection
• 75% will have renal (kidney) involvement
• 15% of pediatric lupus patients die by early adulthood
• Only half hold jobs in adulthood

Today, our national research program continues to tackle the biggest challenges in lupus research. Top lupus experts from many medical specialties help us identify the most pressing scientific challenges. We then aggressively pursue a research agenda to find the answers to the most important questions in lupus. The Foundation’s direct grant programs, combined with their advocacy efforts, have led to a total investment of $80 million for lupus research and education. However, funding for lupus research has not kept pace with diseases of similar morbidity and mortality and the level of research funding on childhood lupus is extremely low. While the LFA is the only national organization with a dedicated childhood lupus research program, there is much more to accomplish.

The opportunities to expand this area of research are great since there are numerous pediatric rheumatologists and immunologists at leading academic institutions throughout the country and around the world who are dedicated to better understanding the pathogenesis and pathophysiology of lupus in children and adolescents.

Our national board has discussed the great need to focus on the next generation of people with lupus and the pediatric research community that will help them to live better lives. In 2006, we established the Michael Jon Barlin Pediatric Research Program with the generous support of the Wallace H. Coulter Foundation making us the first and only lupus advocacy organization in the United States with a dedicated childhood lupus research agenda. In 2014, our largest grant—$500,000 for a five-year study—was awarded for research in pediatric lupus to Dr. Kathleen Sullivan. We would like to expand our Pediatric Research Program to include funding for more experts currently conducting research in this field.

The LFA would also like to create a “home” for children with lupus which serves as a center for the information, tools and resources children with lupus need. This “home” will be created through in depth research for this target audience. We plan to conduct focus groups, interviews and surveys with caregivers and children with lupus to identify their needs. We will use the data gathered to develop a plan for content, programs, resources and tools to be created. We will provide these resources in the format that children and their caregivers identify that they want to receive information.

To address this unique demographic and to provide the best level of education and resources, we have developed a subcommittee to focus on our pediatric initiative from our national Board of Directors as well as working with our existing staff and resources to form an Education Committee Youth Task Force. We also have youth on this committee and they review content for patient friendliness, offer recommendations for strategies to engage youth and participate in organization wide initiatives.

This task force has also created a toolkit for caregivers as well as webinars and live programs, yet these services are limited. Expansion of this program would include developing an “Ask the Experts” series for caregivers and children with lupus based on the results of the in depth interviews and surveys. Expansion of an online program series for caregivers and children with lupus could greatly benefit the thousands of children and their families to better cope with disease. We would also like to connect children with lupus and their caregivers to appropriate tools and resources.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Children and Youth (infants - 19 years.)

Budget

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.

    We will greatly step up our fundraising efforts to ensure we reach our disease-specific goals:

    1. Reduce the time to diagnosis
    2. Ensure people with lupus have an arsenal of safe and effective treatments
    3. Expand direct services and increase access to treatment and care
  2. What are the organization's key strategies for making this happen?
    Lupus is a complex disease that requires a comprehensive strategy. Across the nation, we bring together all stakeholders with an interest in lupus to:

    1. Drive Research that Advances the Science and Medicine of Lupus

    Lead groundbreaking research initiatives, fund innovative studies, and advocate for increased public and private investment in lupus research to advance the science and medicine of lupus;

    2. Educate and Support People with Lupus, Their Caregivers and Healthcare Providers

    Translate research findings into useful programs, information, and tools for people with lupus, and those who care for them are armed with the latest knowledge on diagnosing, treating and caring for individuals with lupus.

    3. Advocate on Behalf of Everyone Affected by Lupus

    Educate policy makers in Washington and state capitals, conduct outreach efforts to increase public understanding of lupus, and share stories of those who suffer from the disease to rally public support to join the fight to end lupus.

    4. Lead the Only National Force Devoted to Solving the Mystery of Lupus

    We execute programs through our unified force of chapters, offices, and support groups in communities nationally. Together we provide caring support and referrals to people with lupus, their families and their caregivers, and help guide them through the complexities of living with lupus.
  3. What are the organization's capabilities for doing this?
  4. How will they know if they are making progress?
  5. What have and haven't they accomplished so far?
Service Areas

Self-reported

National

The Foundation was established in 1977 when local lupus organizations came together to bring national attention and resources to lupus. Since that time, the LFA has evolved into the field's preeminent nonprofit lupus organization with nearly 300 chapters and support groups nationwide.

Social Media

Blog

Accreditations

Better Business Bureau Wise Giving Alliance

Videos

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

The Lupus Foundation of America Inc
Fiscal year: Oct 01-Sep 30
Yes, financials were audited by an independent accountant.

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Operations

The people, governance practices, and partners that make the organization tick.

Lupus Foundation of America, Inc.

Leadership

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Free: Gain immediate access to the following:
  • Address, phone, website and contact information
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  • Board Chair and Board Members
  • Access to the GuideStar Community
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President & Chief Executive Officer

Sandra C. Raymond

BIO

Sandra C. Raymond was named LFA President & CEO in January 2002.  She formerly served as the founding CEO of the National Osteoporosis Foundation. As a women's health advocate, Ms. Raymond is bringing national attention and resources to a significant women's health issue that is poorly understood by the public, health professionals and policy makers. She is providing strong leadership for the LFA to address the urgent need to increase the federal and private investment in lupus research, expand public and professional education on lupus, and develop constructive public policies aimed at assisting people with lupus and their families. Ms. Raymond also is interested in galvanizing an international effort on behalf of lupus research and education.

STATEMENT FROM THE President & Chief Executive Officer

"This is an exciting time for people with lupus, their families.  We have seen historic progress in recent years, and helped lay the foundation for a new paradigm in lupus that includes increased awareness and understanding of lupus, greater investment in lupus research, and the development of new, effective, safer, and more tolerable treatments.  Accelerating medical research on lupus and engaging all relative public and private sources of support in this effort are among the LFA's highest priorities. The LFA is aggressively conducting outreach efforts to increase public understanding of lupus through national awareness campaigns, media outreach, and online and social marketing. We are the leading voice for people with lupus advocating for expanded investment in research and education on Capitol Hill and in state capitols across the country.  Our goal is to ensure that all people affected by lupus have access to the information and services they need.  We thank our supporters, volunteers, and lupus advocates across the nation who band together to help support our efforts on behalf of all those living with lupus."

Governance

BOARD CHAIR

Conrad Gehrmann

Filament, LLC

BOARD LEADERSHIP PRACTICES

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Yes

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?