Congressional Lupus Caucus

Congressional Lupus Caucus The bipartisan Congressional Lupus Caucus was established as a forum for Members of Congress to engage in a dialogue to support the advancement of lupus research and to promote greater awareness and understanding of the disease.

Congressional Lupus Caucus Co-Chairs:
Rep. Tom Rooney (R-FL)
Rep. Bill Keating (D-MA)
Rep. Ileana Ros-Lehtinen (R-FL)
Rep. Jim Moran (D-VA)

Congratulations Lupus Research Alliance advocates! The 2019 spending bill passed by Congress last night grants the two r...
09/27/2018
Lupus Research Alliance Advocates Win Big with 2019 Federal Funding

Congratulations Lupus Research Alliance advocates! The 2019 spending bill passed by Congress last night grants the two requests we made together on Hill Day in March. Once the President signs this bill into law, it will provide $5 million for the Department of Defense Lupus Research Program and a $2 billion increase to the budget for the National Institutes of Health!

https://www.lupusresearch.org/lupus-research-alliance-advocates-succeed-2019-federal-funding-approved-congress/

Lupus Research Alliance is proud to launch a new clinical study with Aker BioMarine that is testing how taking phospholi...
09/04/2018
Battling Lupus with Krill: Phospholipid-rich krill oil a potential new relief option for lupus - Lupus Research

Lupus Research Alliance is proud to launch a new clinical study with Aker BioMarine that is testing how taking phospholipid-rich krill oil daily can benefit people with lupus.

https://www.lupusresearch.org/battling-lupus-krill-phospholipid-rich-krill-oil-potential-new-relief-option-lupus/

August 28, 2018 NEW YORK, NY. Aker BioMarine and Lupus Research Alliance launch a new clinical study, investigating how phospholipid-rich krill oil can benefit people with lupus, with the aim to lessen the severity of symptoms associated with the disease. Affecting an estimated 5 million people worl...

Last Wednesday night, the House Appropriations Committee passed the Labor, Health and Human Services Bill. This legislat...
07/16/2018
House Committee Approves Funding of Critical Lupus Programs

Last Wednesday night, the House Appropriations Committee passed the Labor, Health and Human Services Bill. This legislation includes nearly $9 million in critical funding for lupus research and education.

https://urldefense.proofpoint.com/v2/url?u=https-3A__www.lupus.org_general-2Dnews_entry_house-2Dcommittee-2Dapproves-2Dfunding-2Dof-2Dcritical-2Dlupus-2Dprograms&d=DwMFAg&c=L93KkjKsAC98uTvC4KvQDTmmq1mJ2vMPtzuTpFgX8gY&r=mp28EbTmeOIqzspw-N_A3wWUZKHMPkIWU8nOTN-E7Vk&m=WaxsuqoMs5H2yIlfaXKRaaYTBwjWXc_KzUud2n9nj5o&s=wqg59Ux3iFpTPpqnZFhIlrihjPyHUSjimu2Y44SEPB0&e=

U.S. House of Representatives Appropriations Committee approves spending bill that includes major funding for lupus research and education programs.

Just now, the U.S. Senate Committee on Appropriations approved its Fiscal Year 2019 Department of Defense Appropriations...
06/28/2018
Senate Committee Advances Funding for Lupus Research

Just now, the U.S. Senate Committee on Appropriations approved its Fiscal Year 2019 Department of Defense Appropriations bill, as well as its Fiscal Year 2019 Departments of Labor, Health and Human Services, and Education Appropriations bill. These spending bills include critical funding to advance lupus research, including a $1 million increase for the National Lupus Patient Registry at the Centers for Disease Control and Prevention. Read more:

https://urldefense.proofpoint.com/v2/url?u=https-3A__www.lupus.org_general-2Dnews_entry_senate-2Dcommittee-2Dadvances-2Dfunding-2Dfor-2Dlupus-2Dresearch&d=DwMFAg&c=L93KkjKsAC98uTvC4KvQDTmmq1mJ2vMPtzuTpFgX8gY&r=mp28EbTmeOIqzspw-N_A3wWUZKHMPkIWU8nOTN-E7Vk&m=MzarxLGuFfNJOfYdPYGajRrjyO3VY5YRpGsIRdd1tbk&s=Q2et_DDm-HQuoEdvJjnY8g8VdKG-h7KS1IQ_8x2B35Y&e=

U.S. Senate Committee on Appropriations approves two spending bills that will provide critical funding for lupus research.

A message from the Lupus Research Alliance on the recent vote in the House Appropriations Committee to continue funding ...
06/13/2018
Department of Defense Lupus Research Program Supported in New Bill - Lupus Research

A message from the Lupus Research Alliance on the recent vote in the House Appropriations Committee to continue funding for the Lupus Research Program:

https://www.lupusresearch.org/department-defense-lupus-research-program-supported-new-bill/

June 13, 2018 Our advocates stormed the Capitol in March with requests to robustly fund the Lupus Research Program first established last year within the Defense Department’s Congressionally Directed Medical Research Programs. And our nation’s legislators listened! As a result of advocacy by lup...

Yesterday, the Department of Defense (DOD) announced that 13  research projects would be granted a total of $5 million f...
05/18/2018
Department of Defense Announces Lupus Research Program Awardees

Yesterday, the Department of Defense (DOD) announced that 13 research projects would be granted a total of $5 million for lupus research. The awards are made possible through the new Lupus Research Program.

Lupus advocates worked with the Congressional Lupus Caucus to establish the Lupus Research Program in 2017. The program aims to fund research that will advance the field, and lead to breakthroughs in the causes of lupus, its diagnosis and the development of new medicines to prevent and treat the disease. Learn more:
https://www.lupus.org/general-news/entry/department-of-defense-announces-lupus-research-program-awardees

Through the Lupus Research Program, advocated for by the Lupus Foundation of America, the Department of Defense awards nearly $5 million to lupus researchers.

In honor of #LupusAwarenessMonth, Lupus Caucus Co-Chair, Congresswoman Ileana Ros-Lehtinen (R-FL), addressed the House a...
05/10/2018
Lupus Awareness Month

In honor of #LupusAwarenessMonth, Lupus Caucus Co-Chair, Congresswoman Ileana Ros-Lehtinen (R-FL), addressed the House about the importance of continued lupus research and treatment funding. The Congresswoman has been a committed and steadfast co-chair of the Caucus, and we thank her for her continued support of lupus awareness!

Lupus Awareness Month

https://www.lupusresearch.org/In the first of our month-long Lupus Stories Film Series we'd like you to meet Meredith. S...
05/03/2018
Lupus Research Alliance

https://www.lupusresearch.org/

In the first of our month-long Lupus Stories Film Series we'd like you to meet Meredith. She is an unstoppable nine-year old in Dallas, who isn't able to attend school because of the effects of lupus. Yet, Meredith is enjoying fourth grade through her computerized personal robot "Reggie". Meredith is full of hope and looking forward to the day when she can retire "Reggie" and get back to class in person!

We are the world’s leading private funder of lupus research. Our goal: improve treatments while advancing lupus research toward a cure.

Selena Gomez and PUMA Collaborate for Lupus Research AllianceSelena Gomez has teamed up with international sports brand ...
03/28/2018
Selena Gomez Has a New PUMA Collaboration—and the Secret for Dressing Up Sweats - Lupus Research

Selena Gomez and PUMA Collaborate for Lupus Research Alliance

Selena Gomez has teamed up with international sports brand PUMA to design the “Phenom Lux” shoe with matching socks that will benefit the Lupus Research Alliance! Selena spoke with Vogue about this special collaboration and how the shoe is meant to stand out and help out.
“It’s been really fun to work so closely with PUMA on the design of this shoe. I’m also proud to partner with them in helping to affect lives and bring attention to a cause that is very important to me personally,” says Selena.

“We are extraordinarily grateful to Selena Gomez and to PUMA for helping advance lupus research with their collaboration,” noted Lupus Research Alliance President and CEO Kenneth M. Farber. “As an organization dedicated to fostering innovation, we are proud to be part of a campaign that celebrates novel design and inspires women to take action.”

The Phenom Lux and sock set will be released April 6th exclusively on PUMA.com and PUMA stores globally.

Consumer Reports Rates Lupus Research Alliance Among Five Top Health CharitiesLupus Research Alliance was recommended by...
12/11/2017
Consumer Reports Rates Lupus Research Alliance Among Five Top Health Charities - Lupus Research

Consumer Reports Rates Lupus Research Alliance Among Five Top Health Charities

Lupus Research Alliance was recommended by Consumer Reports as one of the best five health organizations to donate to in 2017. For 80 years, Consumer Reports has provided “evidence-based product testing and ratings, rigorous research, hard-hitting investigative journalism, public education, and steadfast policy action on behalf of consumers’ interests.” The recommendation is based on ratings by independent watchdog groups like BBB Wise Giving Alliance.

“Choosing charities by name alone is a mistake some donors make, and their money sometimes ends up going to less-than-worthy groups. Those organizations perhaps spend too much on administrative costs or are outright scammers,” says Bennett Weiner, chief operating officer of the charity watchdog BBB Wise Giving Alliance. “The issue is particularly important now. About 20 percent of giving occurs during December,” he says.

Consumer Reports Rates Lupus Research Alliance Among Five Top Health Charities Lupus Research Alliance was recommended by Consumer Reports as one of the best five health organizations to donate to in 2017. For 80 years, Consumer Reports has provided “evidence-based product testing and ratings, rig...

The Lupus Research Alliance 2017 Breaking Through Lupus Gala shed a spotlight on the research successes that are making ...
11/27/2017
Selena Gomez says only 3 to 5 percent chance her lupus will return

The Lupus Research Alliance 2017 Breaking Through Lupus Gala shed a spotlight on the research successes that are making a difference and raised over $3.2 million to fund the critical discoveries to come.

Major supporter, NBCUniversal CEO Steve Burke was honored for his commitment to innovation. The evening also honored Lupus Research Alliance Immediate Past Co-President and Co-CEO Margaret G. Dowd for 20+ years of impassioned dedication to advancing lupus research. Selena Gomez spoke, sharing her own lupus experience directly with the lupus community for the first time.

Seth Meyers, NBC-TV’s host of Late Night with Seth Meyers, lent his inimitable wit as emcee, and Tony-award winning Broadway star Kelli O’Hara provided the evening’s exceptional entertainment.

Singer says there's only a 3 to 5 percent chance her lupus will return.

Promising news about new Lupus treatment options:
11/08/2017
Lupus Research Alliance Prompted Stelara® Study for Lupus - Lupus Research

Promising news about new Lupus treatment options:

Lupus Research Alliance welcomes compelling new data, presented at the American College of Rheumatology (ACR) annual meeting that demonstrated significant benefit for lupus patients treated with Stelara® (ustekinumab), a prescription medicine from the Janssen Pharmaceutical Companies. Stelara® is no...

10/31/2017

The Lupus Research Alliance announces our first five clinical trials being conducted through our Lupus Clinical Investigators Network (LuCIN). LuCIN was founded, and is managed and funded by the Lupus Research Alliance to facilitate the development of new lupus treatments.

1. In partnership with Pfizer, the study VAlidation in LUpus of an Electronic Patient Reported Outcomes Tool (VALUE) is testing a smartphone app enabling lupus patients to report on symptoms in real time.

2. In conjunction with Horizon Pharma Rayos Inhibits Fatigue in Lupus Erythematosus (RIFLE) will test the company’s prednisone RAYOS® on severe fatigue and morning stiffness.

3. In collaboration with AMPEL BioSolutions and ImageAnalysis, the Dynamic Imaging to Assess Variation in Lupus Nephritis (DIVINE) study tests the potential for sophisticated MRI technology to assess lupus nephritis.

4. The Lupus Research Alliance is collaborating with Celgene Corporation to study an oral drug CC-220 as a potential treatment for SLE.

5. The Lupus Research Alliance in partnership with Merck/EMD Serono is collaborating to evaluate M2951, a novel inhibitor of Bruton’s Tyrosine Kinase (BTK) in lupus.

As part of the Lupus Foundation of America's National Policy Summit, the Congressional Lupus Caucus was recognized for  ...
06/27/2017
Honoring our Congressional champions

As part of the Lupus Foundation of America's National Policy Summit, the Congressional Lupus Caucus was recognized for making a significant difference in the fight against lupus. The Caucus was represented by co-chairs Ileana Ros-Lehtinen and U.S. Representative Bill Keating.

Today is World Lupus Day! The Lupus Knows No Boundaries e-Report brings together firsthand experiences of people with lu...
05/10/2017
E-Report

Today is World Lupus Day! The Lupus Knows No Boundaries e-Report brings together firsthand experiences of people with lupus, their advocates and those who treat them, to tell the real story of lupus, highlighting the ongoing physical and emotional needs of those who are affected by this incurable disease.

While there is no cure for lupus, lupus can be managed successfully in most cases through early diagnosis and expert medical care.

BREAKING: Lupus Awareness Month got off to an exciting start as Congressional leaders released a spending bill that incl...
05/02/2017
Congress Set to Approve $13 Million for Lupus

BREAKING: Lupus Awareness Month got off to an exciting start as Congressional leaders released a spending bill that includes $13 million in new funding for lupus.

Lupus Awareness Month got off to an exciting start on May 1 as Congressional leaders released a spending bill that includes $13 million in new funding specifically to advance lupus research, education and awareness. Learn more.

New Lupus Medical Research Program Included in Appropriations Bill H.R. 1301 Passed by House of Representatives
03/09/2017
New Lupus Medical Research Program Included in Appropriations Bill H.R. 1301 Passed by House of Representatives

New Lupus Medical Research Program Included in Appropriations Bill H.R. 1301 Passed by House of Representatives

Lupus patients will have a new medical research program at work for them in the future if Bill H.R. 1301 passed today by the House of Representatives becomes law. The House approved the Fiscal 2017 Defense Appropriations Conference Report which designates $5 million for new peer-reviewed lupus resea...

Lupus Research Alliance Salutes Congress for Passing the 21st Century Cures Act — #CuresNow
12/07/2016
Lupus Research Alliance Salutes Congress for Passing the 21st Century Cures Act — #CuresNow

Lupus Research Alliance Salutes Congress for Passing the 21st Century Cures Act — #CuresNow

The Lupus Research Alliance proudly announces that the last major hurdle to the 21st Century Cures Act has been cleared as the U.S. Senate joined the House of Representatives in voting for its passage by an overwhelming majority vote of 94 to 5. Capping two years of consistent advocacy work, the bil...

12/01/2016
House Advances 21st Century Cures Legislation

House Advances 21st Century Cures Legislation

This legislation has the potential to improve the drug development process and bring new and vital treatments to people with chronic diseases like lupus.

Three Leaders in Lupus Merge to Form the Lupus Research Alliance
09/14/2016
Three Leaders in Lupus Merge to Form the Lupus Research Alliance | Lupus Research Institute

Three Leaders in Lupus Merge to Form the Lupus Research Alliance

NEW YORK, NY. July 14 -- The Alliance for Lupus Research (ALR), the Lupus Research Institute (LRI), and the S.L.E. Lupus Foundation today announced the merger of the three organizations to form the Lupus Research Alliance. As the largest private sector organization dedicated to advancing lupus resea...

07/27/2016
Nicole Jackson-Taylor / Lupus (SLE) (Spanish Captions Available)

Nicole Jackson-Taylor: “There’s always someone working to find a cure.”

cc: The NIH Clinical Center and National Institutes of Health (NIH)

Nicole Jackson-Taylor talks about her diagnosis of systemic lupus erythematosus (SLE) and subsequent treatment at the National Institutes of Health (NIH)

07/27/2016
Liliana Chavez / lupus (SLE) (Spanish Captions Available)

New patient videos from the National Institute of Arthritis and Musculoskeletal and Skin Diseases showcase the value of their work on the lives of those with lupus. #NIH #ResearchMatters

Liliana Chavez talks about her diagnosis of systemic lupus erythematosus (SLE) and subsequent treatment at the National Institutes of Health (NIH)

Thanks to the Congressional Lupus Caucus, the House Appropriations Committee today approved a Labor HHS appropriations b...
07/14/2016
News & Stories

Thanks to the Congressional Lupus Caucus, the House Appropriations Committee today approved a Labor HHS appropriations bill that includes critical funding at OMH, CDC and NIH for lupus edication and research.

We are 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.

Caucus Co-Chairs Rep. Thomas J. Rooney, Rep. William Keating, Rep. Ileana Ros-Lehtinen and their staff Put on Purple tod...
05/20/2016

Caucus Co-Chairs Rep. Thomas J. Rooney, Rep. William Keating, Rep. Ileana Ros-Lehtinen and their staff Put on Purple today to raise awareness of lupus!

A new $5 million Lupus Peer-reviewed Medical Research Program to be operated by the U.S. Defense Department has been app...
05/19/2016
New $5 million Lupus Medical Research Program Approved by House Subcommittee | Lupus Research...

A new $5 million Lupus Peer-reviewed Medical Research Program to be operated by the U.S. Defense Department has been approved by the House Appropriations Committee as part of its 2017 Defense Appropriations spending.

New York, NY. May 13. A new $5 million Lupus Peer-reviewed Medical Research Program to be operated by the U.S. Defense Department has been approved by the House of Representatives Defense Appropriations Subcommittee as part of its 2017 Defense Appropriations spending bill approved by the subcommitt...

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Washington D.C., DC

General information

Lupus Research Alliance: https://www.lupusresearch.org/ Lupus Foundation of America: https://www.lupus.org/

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Our Story

Congressional Lupus Caucus Co-Chairs: Rep. Tom Rooney (R-FL) Rep. Bill Keating (D-MA) Rep. Ileana Ros-Lehtinen (R-FL) Rep. Eddie Bernice Johnson (D-TX)

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Comments

I've been involved with the Lupus Foundation in Silicon Valley for over 20 years as board member, vice-chairman, chairman of the board, national stage with LRA, and husband to a Lupus Warrior, my wife, for 25 years. These are unprecedented times with COVID-19, hydroxychoroquine (plaquenil) at the forefront of a potential therapy, my wife has been on the medication for 20+ yrs. We need to come together as a nation and defeat this virus. No lupus patient should live without available resources and access to medical care. We launched www.luphealth.com to provide telemedicine and any lupus patient access to quality care at no cost if they don't have insurance or a means to pay. Now is the time to come together as a nation and support those most vulnerable. http://www.luphealth.com
Good afternoon, does anyone know if this organization has access to resources to assist Lupus sufferers with housing and social service benefits? Thank you.
Take time to join the Gibson Lupus Resource Center tomorrow to remember our lost. As an individual or group or organization. We are calling everyone around the world to release a balloon or balloons on the 26th of May between 10am-12pm. Take pictures and make videos then post them. No matter what state or country you are in. No matter if you raise awareness in May or October. No matter if your colors are purple or orange. Lets show our unity and let others know they are not alone no matter where you are in the world. Lets NOT loose another lupie due to loneliness or lack of knowledge that could save a life. Post or share to the event page or group page by including the hashtag #lovelupusunity #GLRC SPREAD THE WORD - SHARE THE POST! If your in or around the Houston area & would like to take a few minutes out of your time to join us here we will be @ the Atrium Medical Center Hospital 11929 W. Bellfort, Stafford, Texas, 77477
Like everyone else, sometimes I feel alone & scared & unloved & depressed. Yet through everything that has happened Im still here even when they said I was suppose 2 die. Truth is everyone dies, wat r doing until then. Like u I hv purpose. #LupieChicOnTheGo