Lupus Foundation of America

Last updated
Lupus Foundation of America
Founded1977;46 years ago (1977)
Focus"Improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy."
Location
Area served
United States
Key people
Dr. Susan Manzi (Board Chair)
Website www.lupus.org

The Lupus Foundation of America (LFA), founded in 1977, is a national voluntary health organization based in Washington, D.C., with a network of chapters, offices and support groups located in communities throughout the United States. The Foundation is devoted to solving the mystery of lupus. Its mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.

Contents

The Lupus Foundation of America is a charitable organization with tax-exempt status granted under Section 501(c)(3) of the Internal Revenue Code. The foundation is a BBB Accredited Charity [1] and highly rated by Charity Navigator. [2]

Research

The LFA's national research program is focused on identifying the causes of lupus, accelerating development of new treatments and finding cures. It employs a three-pronged approach to advancing the science and medicine of lupus: lead efforts to improve lives today and find cures, fund direct grants to researchers in medical institutions across the U.S. to advance the lupus research field, and advocate for new money and expanded resources from the biggest funders in research: the federal government and the pharmaceutical and biotech industry. [3] The LFA's Center for Clinical Trials Education also provides a comprehensive search tool for clinical trials, points to consider before participating in a clinical trial and a guide to clinical research terms.[ citation needed ]

LFA's direct grant programs, combined with their advocacy efforts, have led to a total investment of $80 million for lupus research and education.[ citation needed ]

Education and support

LFA provides answers to questions and gives caring support to people with lupus and their loved ones. The organization works with lupus experts [4] to answer questions, provide tools, resources and referrals to doctors who treat lupus, and help guide all those affected by lupus toward a better quality of life.

In 2016, LFA conducted a National Needs Assessment on Lupus to take a broad, yet in-depth look at the very specific needs and wants of the diverse lupus patient, caregiver and health care professional communities. In response, the Foundation created the National Resource Center on Lupus. The National Resource Center on Lupus aims to connect, empower and educate those whose lives are impacted by lupus by providing trustworthy, reliable and high-quality resources, programs and emotional support services.

LFA also developed more than 600 medically-reviewed resources in English and Spanish about all aspects of lupus. New content is added on a regular basis developed in response to the needs of the lupus community, including specialized content for children and teens with lupus. [5] Through their National Health Educator Call Center and programs conducted by their National Network, the organization provides direct education, support and referrals for more than 40,000 people. [5] They also provide information to nearly 9 million people through their website annually. [6]

Advocacy

The Lupus Foundation of America and its network of lupus activists across the country have worked diligently to stimulate more than $66 million in federal and state funds for lupus research and education programs. [7] The organization works daily with the United States Congress, federal government agencies and state legislatures to make biomedical research and innovation for lupus a priority. LFA's activists successfully stimulated more than $90 million in new funding for lupus research and education programs since 2004. The Foundation stimulated $28 in federal lupus research and education for every $1 invested in advocacy. [7]

Awareness

LFA's signature fundraising program, Walk to End Lupus Now, has events in more than 60 communities and 70,000 participants, generating visibility, public understanding and support for people with lupus. Money raised is used to support lupus research, education and advocacy programs that serve to improve the quality of life for all people affected by lupus. LFA's multi-media campaign, KNOW LUPUS, continues to educate people about lupus and its impact, has resulted in more than $31 million in donated media and 839 million impressions. [7]

Related Research Articles

<span class="mw-page-title-main">American Society for Microbiology</span> American scholarly society focused on microbiology

The American Society for Microbiology (ASM), originally the Society of American Bacteriologists, is a professional organization for scientists who study viruses, bacteria, fungi, algae, and protozoa as well as other aspects of microbiology. It was founded in 1899. The Society publishes a variety of scientific journals, textbooks, and other educational materials related to microbiology and infectious diseases. ASM organizes annual meetings, as well as workshops and professional development opportunities for its members.

<span class="mw-page-title-main">National Alliance on Mental Illness</span> American nonprofit organization

The National Alliance on Mental Illness (NAMI) is a United States-based nonprofit organization originally founded as a grassroots group by family members of people diagnosed with mental illness. NAMI identifies its mission as "providing advocacy, education, support and public awareness so that all individuals and families affected by mental illness can build better lives" and its vision as "a world where all people affected by mental illness live healthy, fulfilling lives supported by a community that cares". NAMI offers classes and trainings for people living with mental illnesses, their families, community members, and professionals, including what is termed psychoeducation, or education about mental illness. NAMI holds regular events which combine fundraising for the organization and education, including Mental Illness Awareness Week and NAMIWalks.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is one of the institutes and centers that make up the National Institutes of Health, an agency of the United States Department of Health and Human Services (HHS).

<span class="mw-page-title-main">March of Dimes</span> American nonprofit organization

March of Dimes is a United States nonprofit organization that works to improve the health of mothers and babies. The organization was founded by President Franklin D. Roosevelt in 1938, as the National Foundation for Infantile Paralysis, to combat polio. The name "March of Dimes" was coined by Eddie Cantor. After funding Jonas Salk's polio vaccine, the organization expanded its focus to the prevention of birth defects and infant mortality. In 2005, as preterm birth emerged as the leading cause of death for children worldwide, research and prevention of premature birth became the organization's primary focus.

<span class="mw-page-title-main">Reading Is Fundamental</span> US non-profit organization

Reading Is Fundamental, Inc. (RIF) is the oldest and largest non-profit children's literacy organization in the United States. RIF provides books and reading resources to children nationwide with supporting literacy resources for educators, families, and community volunteers.

The New York Community Trust is the community foundation for New York City, with divisions in Westchester and Long Island. It is one of the oldest and largest community foundations in the United States and one of the largest funders of New York City's nonprofits.

The American India Foundation is a nonprofit American organization working in India. It is one of the largest secular, non-partisan American organizations supporting development work in India. AIF is committed to improving the lives of India’s underprivileged, with a special focus on women, children, and youth. It does this through high impact interventions in education, health, and livelihoods, because poverty is multidimensional. AIF’s unique value proposition is its broad engagement between communities, civil society, and expertise, thereby building a lasting bridge between the United States and India. Till date, AIF has impacted 6.7 million lives across 26 states of India.

A Patient Safety Organization (PSO) is a group, institution, or association that improves medical care by reducing medical errors. Common functions of patient safety organizations are data collection and analysis, reporting, education, funding, and advocacy. A PSO differs from a Federally designed Patient Safety Organization (PSO), which provides health care providers in the U.S. privilege and confidentiality protections for efforts to improve patient safety and the quality of patient care delivery

<span class="mw-page-title-main">National Psoriasis Foundation</span>

The National Psoriasis Foundation (NPF) is the world's largest nonprofit organization serving people with psoriasis and psoriatic arthritis. The NPF provides information and services to help people manage their condition while supporting research to find a cure. In addition to serving more than 3 million people annually through patient and professional health education and advocacy initiatives, the NPF has funded more than $10 million in psoriatic disease research grants and fellowships.

Lupus Canada is a national voluntary organization dedicated to improving the lives of people living with systemic lupus erythematosus (SLE) through advocacy, education, public awareness, support and research. Formed in 1987, Lupus Canada is a federally registered non-profit charity and its national office is located in Markham, Ontario.

Candid is an information service specializing in reporting on U.S. nonprofit companies. In 2016, its database provided information on 2.5 million organizations. It is the product of the February 2019 merger of GuideStar with Foundation Center.

<span class="mw-page-title-main">Food Allergy Research & Education</span>

Food Allergy Research & Education (FARE) is a non-profit, private organization dedicated to food allergy awareness, research, education, and advocacy. FARE's goal is to enhance the lives of people with food allergies by providing support and resources to help them live safe yet productive lives. FARE also includes information for people without food allergies, who are looking to not only be respectful of others but also become more educated and gain more awareness regarding healthcare and treatments. The organization provides information, programs, and resources about food allergies and anaphylaxis, a severe, potentially life-threatening allergic reaction. Working on behalf of more than 32 million Americans who have potentially life-threatening food allergies, FARE’s mission is to improve the quality of life and health of those with food allergies, and to provide hope for the development of new treatments and diagnostics.

<span class="mw-page-title-main">Services & Advocacy for GLBT Elders</span>

Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE) is America's oldest and largest non-profit organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBT) older adults, focusing on the issue of LGBT aging. According to its mission statement, "SAGE leads in addressing issues related to lesbian, gay, bisexual, transgender, queer and questioning and other self-identifying members of the community (LGBTQ+) aging. In partnership with its constituents and allies, SAGE works to achieve a high quality of life for LGBTQ+ older people, supports and advocates for their rights, fosters a greater understanding of aging in all communities, and promotes positive images of LGBTQ+ life in later years." SAGE is a 501(c)(3) organization that focuses on advocacy on the local and federal levels, as well as activities, groups and programs that encourage LGBTQ+ older adults to stay connected with each other and the community.

<span class="mw-page-title-main">IBON Foundation</span>

The IBON Foundation is a non-profit research, education and information-development institution with programs in research, education and advocacy based in the Philippines. It provides socioeconomic research and analysis on people's issues to various sectors. It aims to contribute to people's empowerment through education and advocacy support. The foundation is also engaged in international solidarity work.

The Pancreatic Cancer Action Network (PanCAN) is a United States-based 501(c)(3) charity that funds research, provides patient/caregiver support, conducts community outreach and advocates for increased federal research funding for those affected by pancreatic cancer.

<span class="mw-page-title-main">Rare Diseases Act of 2002</span> US law

The Rare Disease Act of 2002 is a law passed in the United States that establishes the statutory authorization for the Office of Rare Diseases as a federal entity able to recommend a national research agenda, coordinate research, and provide educational activities for researchers.

<span class="mw-page-title-main">Alzheimer's Foundation of America</span> Non-profit organisation in the USA

The Alzheimer's Foundation of America (AFA) is an American nonprofit organization based in New York City whose mission is to provide support, services and education to individuals, families and caregivers affected by Alzheimer's disease and related dementias nationwide, and fund research for better treatment and a cure. AFA unites more than 2,000 member organizations from coast-to-coast that are dedicated to meeting the educational, social, emotional and practical needs of individuals with Alzheimer's disease and related illnesses, and their caregivers and families. Member organizations include grassroots Alzheimer's agencies, senior centers, adult daycare center, home healthcare agencies, long-term care residences, research facilities, and other dementia-related groups. AFA holds Charity Navigator's highest rating of 4 stars.

Ovarian Cancer Research Alliance (OCRA) is a not-for-profit organization focused on ovarian cancer research, advocacy and patient support. The organization was formed in January 2016 when the former not-for-profit organization Ovarian Cancer Research Fund, which focused primarily on ovarian cancer research, combined with Ovarian Cancer National Alliance, which focused primarily on ovarian cancer advocacy and support programs, to form one organization.

<span class="mw-page-title-main">Catholic Medical Mission Board</span>

The Catholic Medical Mission Board (CMMB) is an international, faith-based NGO, providing long-term, co-operative medical and development aid to communities affected by poverty and healthcare issues. It was established in 1912 and officially registered in 1928. CMMB is headquartered in New York City, USA, and currently has country offices in Haiti, Kenya, Peru, South Sudan, and Zambia.

The Hispanic Federation (HF) is a U.S based non-governmental organization focused on supporting Hispanic communities through local, state, and national advocacy. The Federation was founded in New York City in 1990 by a small group of Latino leaders, establishing initiatives to advocate for the interests of the Hispanic community and has expanded to establish programs, and policies in 16 states. The organization's objective is to empower and advance the Hispanic community primarily through service pillars, membership services, advocacy, and community programs. The Federation has formed relationships with a network of 100 Latino grassroots nonprofits, as well as collaborating with organizations, government officials, and private sector partners to enact systemic change related to a variety of socioeconomic issues for Hispanic communities. The Federation has gained national recognition for its work in areas of education, health, immigration, economic empowerment, civic engagement, environment, and organizational development to strengthening Latino institutions to ultimately increase the quality of life within Hispanic communities.

References

  1. "Charity Report - Lupus Foundation of America". BBB Wise Giving Alliance .
  2. "Rating - Lupus Foundation of America". Charity Navigator.
  3. "Advancing Research | Lupus Foundation of America". www.lupus.org. Retrieved 2023-01-26.
  4. "Lupus Foundation of America Medical Scientific Advisory Council".
  5. 1 2 "Lupus Foundation of America Annual Report" (PDF).
  6. "Analytics Tools & Solutions for Your Business - Google Analytics". Google Marketing Platform.
  7. 1 2 3 "Lupus Foundation of America Annual Report" (PDF).