Two recent studies funded in part by the Lupus Research Alliance offer a new, more detailed understanding of the genetic causes of lupus as well as potential therapy approaches. One study shows a potential mechanism for how a variant for the gene neutrophil cytosolic factor 1 (NCF1) may lead to systemic lupus erythematosus (SLE). Another study explains how the gene called interleukin 10 (IL-10) becomes overactive in lupus patients. Both studies were directed by Dr. Betty Tsao, the Professor and Richard M. Silver Endowed Chair for Inflammation Research, at the Medical University of South Carolina.

When the Immune System Can’t Do its Job

The first study, published in the journal Annals of the Rheumatic Disease suggests that a variant of the gene NCF1 affects the ability of the immune system to remove dying or dead cells. Normally, a type of immune cell, called a macrophage, is responsible for the removal of dead or dying cells from the body. However, when dead cells are not removed in a timely manner, this can cause autoinflammation which can lead to autoimmune diseases such as SLE.

Dr. Tsao and colleagues sought to understand how mice with a variant of gene NCF1 that functions less efficiently developed a lupus-like condition. They discovered that these mice had defective macrophages that could not properly remove dead cells; this caused an increase in the frequency of occurrence of a specific subset of helper T lymphocytes that could promote autoantibody production and the development of lupus-like kidney disease. The investigators showed that their findings in mice could be confirmed in patients affected with lupus, and lupus patients carrying two copies of this risk variant had a higher risk to develop kidney damage.  These results show that finding a way either to restore the ability of macrophages to remove dead cells or to prevent the expansion of the specific helper T lymphocytes in lupus patients might be an effective therapeutic strategy.

Too Much of a Good Thing Turns Bad

The second study, published in the journal Arthritis & Rheumatology  looked at how a gene called IL-10 becomes over-activated in lupus patients. Lupus patients have increased levels of IL-10 that are thought to support the production of damaging autoantibodies, which attack the body’s own tissues and organs.

While healthy individuals have IL-10 producing B cells to regulate the immune system, Dr. Tsao and colleagues found lupus patients have elevated  IL-10 producing B cells poised to become plasmablasts, which can lead to the development of disease-causing antibody-producing cells. They found that in SLE patients, IL-10 accumulates in B cells because the regulators that control its activity — a gene called E2F2 and a molecule called miR-17-5p – are not working properly. This finding suggests that modifying the activity of this gene and molecule may help normalize IL-10 production in SLE patients.

Both studies provide novel information about the genetic causes of lupus. These two studies also suggest new ways for treating lupus that could allow for better management of this disease.

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When it comes to the likelihood of developing an autoimmune disease such as lupus, there is a clear difference between sexes, with 9 women diagnosed for every one man. Two recent studies, both funded by the Lupus Research Alliance (LRA), offer insight into what may be driving this difference. Part of the reason may be due to a phenomenon called X-inactivation escape, which can cause genes that determine gender to be turned on at different levels in women versus men.

Lupus symptoms linked with accumulation of age-associated B cells

In the first study, published in the journal Nature Communications, LRA grantee Dr. Alessandra B. Pernis and colleagues at the Autoimmunity and Inflammation Program, Hospital for Special Surgery and Weill Cornell Medical College looked at a subset of immune cells, called age-associated B cells. This unique type of B cell plays a role in determining how the immune system responds to viruses as well as autoimmune disorders. Moreover, the number of age-associated B cell increase as the person gets older and are thought to contribute to “immunosenescence,” a process known as a gradual decline in the strength of the immune system with age. The development and activity of age-associated B cells depend on two molecules present on these cells, Toll-like Receptor 7 (TLR7) and TLR9. Although it’s been known that these cells are involved in autoimmune disorders, it has remained unclear how they contribute to autoimmunity.

To answer this question, researchers studied mice with a lupus-like condition that causes an accumulation of age-associated B cells. They found that more of these cells accumulated in female mice versus male mice, and that they turned into B cells that fueled inflammation. This accumulation of age-associated B cells was found to be the result of the TLR7 gene, which is located on the female X chromosome, and is present at higher levels in female mice.

X-inactivation is a biological process that equalizes gene expression on the X chromosome

TLR7 is a gene known to undergo a variable escape X-inactivation. X-inactivation is a biological process that is meant to compensate for the different number of sex chromosomes in women versus men. Since women have two X chromosomes, while men only have one, a lack of X chromosome in men could create an imbalance in the overall amount of gene expression in men versus women. Since gene expression ultimately leads to the formation of proteins with a specific function, differing levels can have an impact on a cell’s function. X-inactivation, means that only one copy of a gene, known as an allele, is expressed in women, while the second copy is inactivated. X-inactivation therefore ensures that females, like males, have one functional copy of the X chromosome in each body cell.

However, about 10% of the genes on the X chromosome “escape” X-inactivation which means that the expression of these genes is present in women at higher levels than in men. Interestingly, up to 30% of genes located on the X chromosome are capable of “variable escape”, which means that only some women compared to men have higher levels of gene expression or that women versus men have gene expression elevated in some but not all tissues or organs. Currently, there is still much to learn about the potential role of variable escape X-inactivation in diseases such as lupus, where there is a clear difference in the likelihood of women developing the disease, as opposed to men.

Study shows diseases influenced by gender have a high number of genes showing X-inactivation escape

In the second study, published in the journal Genome Research, Dr. Laura Carrel and team at Penn State College of Medicine used her LRA grant to develop a method to look at genes that escape X-inactivation. To study these genes, they used data collected by RNA sequencing, a method that detects the presence and amounts of message (ribonucleic acid or RNA), which is a metric for measuring gene expression levels, in samples from specific body tissues. They then tested this method using data from the UK Biobank, which is a biobank following volunteers to assess the role of genetic and environmental factors in the progression of disease.

What they found was a higher number of escape and variable escape X-inactivation genes in diseases that are influenced by gender. This result, in addition to the first study’s conclusions about the effect of the differential expression of TLR7 in female mice, suggests that differences in X-inactivation escape may be an explanation for why a disease such as lupus develops in women more than men.

“Women’s higher propensity to develop lupus than men has been a long-standing question,” noted LRA Chief Scientific Officer Dr. Teodora Staeva.  “These new studies offer important mechanistic insights that could guide therapeutic interventions.”

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En reconocimiento del Mes de la Herencia Hispana, compartiremos una entrada del blog de la profesional Priscilla Toral, trabajadora social clínica con licencia (LCSW) en el Hospital for Special Surgery, sobre cómo manejar el lupus siendo hombre. Las comunidades hispana y latina se encuentran entre las que tienen mayor riesgo de contraer lupus. El lupus se conoce tradicionalmente como una “enfermedad de la mujer” porque afecta a las mujeres nueve veces más que a los hombres. Es por esto que, con frecuencia, los hombres no consideran que pueden desarrollar esta enfermedad. Además, es posible que las creencias masculinas sociales, culturales y tradicionales de lo que significa ser un hombre, hagan que sea aún más difícil hacer frente al lupus.

El Hospital for Special Surgery (HSS) es un miembro que colabora activamente con la Red de investigadores clínicos del lupus (LuCIN) de los centros de investigación académica de la Alianza para la investigación del lupus (LRA).

El lupus no afecta solamente a las mujeres: consejos para sobrellevar la enfermedad para hombres con lupus

La comunicación es una parte fundamental para hacer frente a todos los desafíos que puede enfrentar como hombre con lupus. Para vivir una vida saludable con lupus, es importante ser consciente de lo que necesita y cómo pedir apoyo y recursos. A continuación, se incluyen algunas sugerencias útiles que pueden ayudar a quienes buscan apoyo:

• El lupus no lo define a usted ni a su nivel de masculinidad. Aunque el lupus puede hacer que sea desafiante participar en actividades rigurosas, hable con su médico sobre su nivel de habilidad y decida qué actividades pueden ser útiles e inclúyalas en su rutina diaria. Su médico puede sugerirle realizar la actividad actual con moderación o ayudarlo a incorporar actividades nuevas que puede disfrutar.
• Comunicarse con su médico es fundamental para manejar su afección con éxito. Prepárese para sus citas, mantenga un registro de sus síntomas y escriba sus preguntas. Mantener una lista de preguntas e inquietudes lo ayudará a organizar sus pensamientos, disminuirá las inquietudes relacionadas con su afección y garantizará que aproveche al máximo sus visitas médicas. Tenga al alcance de la mano la información de contacto importante como el número del consultorio de su médico, de la farmacia y la información del seguro.
• El lupus puede ser impredecible e invisible. Es posible que se vea bien para los demás, pero puede estar inflamado o sentirse muy enfermo. Es importante mantenerse informado e instruido con respecto a sus síntomas y cómo lo afectan. Esto lo ayudará a compartir información adecuada con su equipo de atención médica y seres queridos para garantizar que se satisfagan sus necesidades.
• Hombres: está bien expresar el impacto emocional que el lupus tiene en sus vidas. El apoyo puede aparecer en varias formas y es de gran ayuda compartir sus pensamientos con otros hombres con experiencias similares. Acérquese a su sistema de apoyo, comparta hasta donde se sienta cómodo y conecte con otros hombres. También puede ser útil hablar con un proveedor de servicios de salud mental para manejar el lupus.
• Busque ayuda y apoyo. El HSS, a través del Departamento de programas de trabajo social ofrece varios servicios de apoyo y de enseñanza gratuitos y nacionales que incluyen talleres mensuales sobre el lupus eritematoso sistémico (LES), LupusLine®, LANtern® (LupusAsian Network)® y Charla de Lupus (Lupus Chat)®.

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In recognition of Hispanic Heritage Month, we are sharing a blog post from Latina professional Priscilla Toral, LCSW at Hospital for Special Surgery for managing as a male with lupus. The Hispanic/Latino community are among those at higher risk for lupus. Lupus is traditionally known as a woman’s disease, because it affects women 9 times more than it affects men. Often, men do not see themselves as people who develop this disease. Social, cultural and traditional masculine beliefs of what it means to be a male may make it even more challenging to cope with lupus.

From Priscilla Toral, LCSW:

Lupus Isn’t Only a “Women’s Disease”: Coping Tips for Men with Lupus

Communication is a vital part of coping with the many challenges you may face as a male with lupus. Being aware of what you need and how to ask for support and resources is important to living a healthy life with lupus. Here are some helpful suggestions that may provide help for those looking for support:

• Lupus does not define you or your level of masculinity. Although lupus might make it challenging to engage in rigorous activity, talk with your doctor about your level of ability and decide what activities may be helpful to include in your daily routine. Your doctor may suggest your current activity in moderation or help you to incorporate new activities you may enjoy.
• Communication with your doctor is key to the successful management of your condition. Prepare for your appointments by keeping a log of your symptoms and writing down your questions. Keeping a list of your questions and concerns will help to organize your thoughts, ease concerns related to your condition and ensure you get the most out of your medical visits. Keep important contact information at your fingertips, such as your doctor’s office number, pharmacy and insurance information.
• Lupus can be very unpredictable and invisible. You may look fine to others but may be flaring or feeling very ill. It’s important to stay informed and educated regarding your symptoms and how they impact you. This will help you to share appropriate information with your health care team and loved ones to ensure your needs are being met.
• Males, it’s ok to express the emotional impact that lupus has on your life. Support can come in many forms and often sharing your thoughts with those with similar experiences is helpful. Reach out to your support system, share at your level of comfort and connect with other males. Talking to a mental health provider may also be helpful in your lupus management.
• Seek help and support. HSS offers through the Social Work Programs Department  a number of free and national support and education services including monthly SLE Workshops, LupusLine®, LANtern® (LupusAsian Network)® and Charla de Lupus (Lupus Chat)®.

Hospital for Special Surgery (HSS) is a highly active member of LRA’s LuCIN network of academic research centers managed by its affiliate Lupus Therapeutics.

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LRA will host the world’s largest immersive lupus Walk experience. The program will kick off with a welcome by NFL Superbowl Champion Willie Colon, followed by inspirational speakers from the lupus community, lupus research updates, and interactive activities. 100 percent of every dollar raised will support lupus research to unravel the complexity of this disease affecting millions of people, particularly women of color, in millions of different ways.

Walkers are encouraged to participate and fundraise in their own way — wherever, whenever, and however they prefer — to help fund breakthroughs that can improve the lives of people with lupus. Walks around the neighborhood, a jog in the park, a sprint with your pup or running up and down stairs are fun ways to get into the Walk spirit.

“Since we cannot gather in person again this year, the LRA is bringing the lupus community together for a virtual but very real celebration of all the tremendous advances including three new treatment options after a 10-year gap,” commented Kenneth M. Farber, LRA President and CEO. “Over the past year, lupus has seen a major leap forward in progress with incredible promise on the horizon.”

The organization greatly appreciates the support of all its sponsors, including GSK, Johnson & Johnson, Bank of America, KPMG, Aurinia Pharmaceuticals, Blue Cross Blue Shield, iHeart Radio, CBS-TV, Hospital for Special Surgery, and Northwell Health.  Special thanks go to the thousands of people contributing to finding better treatments and a cure. Because the LRA’s Board of Directors covers all administrative and fundraising costs, 100 percent of funds raised goes directly to lupus research programs.

REGISTRATION:  Participation is free. However, ManyOne Can Walk with Us to Cure Lupus is a major fundraising event, and everyone is encouraged to raise donations to support lupus research. Visit https://manyonecanfall21.vfairs.com/ to participate Email Walks@LupusResearch.org for more information about the event.

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• Should people with lupus be vaccinated against COVID-19?
• Should people with lupus take the third dose of the Pfizer/Biogen or Moderna mRNA COVID-19 vaccine?
• Do people with lupus qualify as immunocompromised?
• How can people with lupus protect themselves from COVID-19?

Many of you have had these questions and more since the U.S. Centers for Disease Control and Prevention approved a third dose of the Pfizer/Biogen or Moderna COVID-19 mRNA vaccines for certain immunocompromised people.  The best answers we have seen are outlined in guidelines for healthcare providers issued by the American College of Rheumatology (ACR), the preeminent organization of rheumatologists, the specialists most commonly involved in treating lupus and other rheumatic diseases. For your reference, we have summarized the main points covered by the ACR guidelines as outlined in a press release from the ACR:

• A third dose of Pfizer-BioNTech COVID-19 vaccine (age 12 years and older) or Moderna mRNA COVID-19 vaccine (age 18 years and older) is recommended at least 28 days after the second dose of an mRNA vaccine for patients on immunosuppressive or immunomodulatory therapy, except for hydroxychloroquine. Sticking to the same one you took for the first and second doses is recommended if possible.
• Patients should consult with their rheumatologists about holding certain immunomodulatory or immunosuppressive medications for one to two weeks after booster vaccination if disease activity allows.
• Patients on rituximab or other anti-CD20 medications should discuss the best timing with their healthcare provider before receiving a third dose.As ACR explains: ”Some practitioners measure CD19 B cells as a tool with which to time the booster and subsequent rituximab dosing. For those who elect to dose without such information, or for whom such measurement is not available or feasible, the recommendation is to provide the third dose two to four weeks before the next anticipated rituximab dose (e.g., at month 5.0 or 5.5 for patients who receive rituximab every six months).”
• For rheumatology patients who have not yet been vaccinated at all, the ACR task force recommends receiving either of the two mRNA vaccines over the single-dose Johnson & Johnson (J&J) vaccine.
  As the ACR explains “the preference for the mRNA vaccines was is partially driven by the fact that a supplemental dose is now authorized for the mRNA vaccines. This issue may be revisited if a supplemental dose strategy becomes authorized and recommended for patients who received the single dose vaccine.”
• High-risk rheumatology patients who have been exposed to an individual with COVID-19 should ask their healthcare provider if taking a monoclonal antibody treatment would be beneficial as a precautionary measure in addition to vaccination.
• Rheumatology patients should continue to follow all public health guidelines regarding physical distancing and other preventive measures following vaccination.

To learn more, please refer to the full guidelines posted on the ACR website.

Please note that this article is for informational purposes only and does not substitute for medical advice. It is essential to talk with your healthcare provider about the best way to protect yourself from COVID-19.

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NEW YORK, NY. Sept. 21. Today, the Lupus Research Alliance is pleased to announce the inaugural recipients of its largest grant to date, the Global Team Science Award, which will fund international, multidisciplinary research teams to unravel lupus heterogeneity with the goal of leading to new personalized treatment approaches.  The two 2021 awards will enable the work of teams led by internationally renowned lupus researchers Virginia Pascual, MD, Drukier Director of the Gale and Ira Drukier Institute for Children’s Health and Ronay Menschel Professor of Pediatrics at Weill Cornell Medicine; and Ignacio Sanz, MD, Mason I. Lowance Professor of Medicine and Pediatrics and Chief Division of Rheumatology, Emory University School of Medicine.

Providing $3 million to each multidisciplinary team over three years, the Global Team Science Award will support collaborative, and highly synergistic projects that push the boundaries of innovation to bridge research and clinical initiatives in lupus. Teams will untangle lupus heterogeneity by applying cutting-edge technologies to address critical questions that aim to bring about breakthroughs in lupus care, research, or drug development. These highly ambitious awards are made possible by a generous grant from Bloomberg Philanthropies. 

“This award is the first of two key initiatives stemming from LRA’s strategic plan for research. As such, the Global Team Science Award embodies LRA’s strategic priorities of defining lupus heterogeneity, enabling patient stratification, and fostering collaborative global research and technology teams,” noted Teodora Staeva, PhD, LRA Chief Scientific Officer. “These first two projects selected from among many compelling proposals, examine important underlying mechanisms of the autoimmune response and point the way to potential new treatment approaches.” 

The new Award received a robust response from the worldwide scientific community, and a committee of prominent investigators selected six projects to receive four-month planning grants to develop full applications. These were then reviewed by a specially empaneled study section followed by a high-level review by the LRA’s Scientific Advisory Board and ultimately by the LRA Board of Directors to select the two funded projects.  

Identifying Differences in Genetic Makeup to Stratify Children with SLE into Specific Groups 

The two-part project led by Dr. Pascual will categorize patients based on immune cell characteristics and how they impact individual disease activity. The first part will focus on identifying the immune cells that may track with how lupus affects pediatric patients so differently. Information on these immune cells will be recorded throughout various points of the disease pathway. In the second part, Dr. Pascual and her team will study the genetic differences that may be present among children with lupus and compare these genetic factors to that of healthy controls and their parents’ family members to help categorize groups of people with lupus.  

“Our findings will help inform the development of targeted treatment for both children and adults based on our increased understanding of the characteristics and activities of each immune cell component involved throughout lupus progression.” said Dr. Pascual.   

Dr. Pascual’s team consists of the following investigators: Dr. Peter Nigrovic (Immunology and Rheumatology), at Boston Children’s Hospital; Dr. Linda Hiraki (Genetic Epidemiology and Translational Research) at Toronto Hospital for Sick Children; Dr. Deepak Rao (Rheumatology and Immunology) at Brigham and Women’s Hospital; and Carola Garcia de Vinuesa (Rheumatology, Immunology and Autoimmunity) at Australian National University.  

Linking Different B Cell Types to Lupus Symptoms, Progression and Response to Therapy 

Dr. Ignacio Sanz and his team at three institutions will focus on identifying the characteristics of the B cells and plasma cells that create attacking antibodies in the development and progression of severe lupus specifically in African American patients. The project will define how the different characteristics of these cells correspond to patients’ responses to treatment.  

“Each patient can respond differently to treatment and have a wide range of symptom severity – usually because of B cells and plasma cells – the cells behind the start of lupus, said Dr. Sanz. This research will allow us to further understand how this diversity impacts each patient experience, allowing us to cater, design, and evaluate clinical studies and standard of care treatments with the goal of implementing safer and more effective personalized treatments.” 

The team led by Dr. Sanz includes several colleagues at Emory University: Drs. Frances Eun-Hyung Lee (Pulmonary-Allergy-Critical Care), Sung Sam Lim and Arezou Khosroshahi (Rheumatology), Jeremy Boss, and Christopher Scharer (Microbiology and Immunology); as well as Dr. Gary Gilkeson and Bethany Brown at Medical University of South Carolina; and Drs. Frances Lund and Alex Rosenberg (Microbiology and Immunology), Winn Chatham and Troy Randall (Rheumatology), at University of Alabama at Birmingham School of Medicine. 

About Lupus  

Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90 percent of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. African Americans, Latinx, Asians and Native Americans are two to three times at greater risk than Caucasians. In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints. 

About the Lupus Research Alliance Global Team Science Award (GTSA) 

Incomplete understanding of the tremendous clinical and mechanistic heterogeneity of SLE – how it differs from person to person – remains a central challenge to developing safer and more effective treatments and to improving the standard of care for lupus patients. To address this impediment, the Lupus Research Alliance established the Global Team Science Award in 2020. The Award supports highly ambitious projects that build teams of established scientists from around the world to combine their expertise in diverse fields including technology, informatics (the study of information processing) immunology, and clinical research to work on a common project from distinct perspectives. It is expected that GTSA Teams will bring about breakthroughs with a high potential for transforming lupus care tomorrow. 

About the Lupus Research Alliance
The Lupus Research Alliance is the largest non-governmental, non-profit funder of lupus research worldwide. The organization aims to transform treatment by funding the most innovative lupus research, fostering diverse scientific talent, and driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus. Because the Lupus Research Alliance’s Board of Directors funds all administrative and fundraising costs, 100% of all donations goes to support lupus research programs. 

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Four-time NYC Marathoner Amy Cargain is taking on the challenge once again this year because every mile helps raise awareness for lupus and lupus research.  And for Amy, the Lupus Research Alliance was her number one charity to run for.  “The LRA is home to me, and the staff is like family.  I would only run for lupus.”

Running has always been a part of Amy’s life. As a teenager, she was feeling severe fatigue, achy joints and rashes.  “I would have to miss track meets because I just couldn’t move.  It took about a year of seeing many doctors before I finally was diagnosed with lupus.”

How does she do it?  Amy describes taking “ownership” of her disease.  “Most of the time, running makes me healthier. But when I am feeling pain in my joints, have a fever, my skin is inflamed or I have a persistent headache, I know my body is telling me to take a time out.”

The day of the Marathon, sheer determination keeps her going.  “I focus entirely on crossing that finish line. I keep running to see my boyfriend Dino at the end of the race. I imagine calling my mom and sharing my triumph. I have her spirit running alongside of me the whole way.”

Amy has raised more than $25,000 over the years for research funded by the LRA and her goal for 2021 is $4,000 more.  She attributes her success to people’s belief in her. “I’m often told I’m a warrior and inspiration to others.  I think that’s because I keep going in spite of lupus.  No matter what, I wake up each day and go to work.  I rest when I can and run when I can.”

Amy’s motto is “if I can do it, you can too.”  She recommends taking part in the Marathon in whatever way works for you – jogging if you can’t run and walking if you can’t jog.  However you get there, you won’t believe the sense of accomplishment and empowerment you will feel when you finish.”

Everyone is encouraged to get involved in their own way – cheer from the sidelines, tune in on TV, donate to one of LRA’s runners. “What’s most important is raising awareness for lupus and resources for lupus research.”

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The United Nations designated September 5 as the annual International Day of Charity to urge people worldwide to help others through volunteer and philanthropic activities.  The Lupus Research Alliance is happy to join groups around the world in acknowledging this important yearly observance. 

We are very proud to be recognized by several independent charity watchdog organizations that monitor and encourage sound practices for nonprofits including BBB Wise Giving Alliance, Charity Navigator, and the Combined Federal Campaign.  

• For instance, the BBB Wise Giving Alliance (WGA) accredits the LRA for having met all 20 of its Standards for Charity Accountability. Meeting these criteria provides charities like the LRA with a roadmap to ethical and efficient operation and helps us achieve our primary goal – to help people efficiently and efficiently. The LRA even exceeds the financial requirement; the WGA mandates that every accredited group spend 65% of its expenses on program activities and the LRA spends 100% of every dollar donated from the public on research programs because our Board of Directors covers all administrative and fundraising costs. 

• Lupus Research Alliance also has earned the highest 4-star rating from Charity Navigator, America’s largest independent charity evaluator. Awarded for its strong financial health and commitment to accountability and transparency, the LRA has earned this distinction every year since we were founded in 2016.   

• Candid, another independent organization that evaluates non-profits, gives their GuideStar Gold Seal of Transparency to the LRA which requires a financial audit and demonstrated commitment to inclusivity. 

• The Lupus Research Alliance is also among the many organizations deemed eligible to participate in the Combined Federal Campaign (CFC), the official workplace giving campaign for federal employees and retirees.  CFC is the world’s largest and most successful annual workplace charity campaign, having raised more than $8.5 billion for charities and people in need since its inception 60 years ago.  If you are or were a federal employee, click here to learn more about donating to the LRA through this program which starts September 1, 2021. 

The LRA strongly supports the U.S. military, having effectively advocated for the creation of the Lupus Research Program in the Department of Defense’s (DoD) Congressionally Directed Medical Research Program.  We presented our case to initially fund the program based on the growing numbers of people affected by lupus among active service members and veterans. Every year since, LRA advocates have succeeded in gaining federal funding to maintain the program. 

“We are very proud to meet the strict criteria of all these independent organizations,” noted LRA’s Chief Financial Officer Debra Rose.  Earning these distinctions tells donors that the Lupus Research Alliance is a non-profit they can trust to invest in the highest quality science with the greatest potential to help people with lupus. And it tells our community that we are spending every dollar of every donation on their behalf.”  
 

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We give a big thank you to the Lupus and Allied Diseases Association, Inc. (LADA) for their generous donation of $120,000 to support research funded by the Lupus Research Alliance.  The funding is specifically directed to Dr. Zahi Touma at University of Toronto for his Modeling Cognitive Impairment project and Dr. Joyce Chang at Boston Children’s Hospital for her Vascular Injury project.

As pictured, the check was presented to key LRA staff members Jonathan Marks, Dorey Neilinger and Albert Roy by LADA President & CEO Kathleen A. Arntsen and Secretary David L. Arntsen August 19 during their 21st Annual Lupus Charity Golf Classic at Shenendoah Golf Club in upstate New York.  This brings the 20-year research support that LADA has provided to the LRA to $831,050 – and every dollar will go directly to these promising projects!

LRA Executive Director Andrea O’Neill commented, “Lupus and Allied Diseases Association is an exceptionally effective organization which believes as we do in the power of science to improve the lives of people with lupus.  We are honored to accept this extraordinarily generous gift on behalf of our shared lupus community.”

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