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ALR Public Policy

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Since 2004, the Alliance for Lupus Research (ALR) has successfully advocated for greatly increased federal funding for lupus research.

Through the Department of Defense: In 2004, the ALR was successful in in its efforts to have lupus included in the list of diseases funded under the Department of Defense (DOD) Peer Reviewed Medical Research Program. This was the first time that lupus has been included as one of the 23 scientific topic areas covered by this $50-million competitive grant program. This effort has equalled an additional $8-million to lupus research. For more information on these federally-funded projects, please click here.  

Through the National Institutes of Health (NIH): Thanks in part to the ongoing work of our advocates, the NIH, the U.S. Government's largest funder of medical research, has increased its support of lupus research by a projected $41-million! Click here to view the NIH's most recent Research Portfolio.

  

Facts on Lupus*:

  • Lupus hits hardest one of our nation's most medically-underserved populations.
  • While the disease also affects men and children, 90% of all those diagnosed are women in their childbearing years.
  • Women of African-American descent are two-thirds more likely to be diagnosed with lupus. Also particularly vulnerable are women of Hispanic, Asian, and Pacific Islander descent.
  • Lupus costs the nation over $100 billion a year in direct and indirect medical costs.
  • The number of Americans currently affected by lupus is estimated at 1.4 million.

*All statistics from U.S. Department of Health and Human Services.

 

 

 Comments and Feedback

 

Submitted by Kerry at: November 14, 2013
I was Diagnosed with Both types of lupus in 2011. I am also dealing with Fibromyalgia and Siatica as a result. I have been off my meds for about a year and a half and have discovered that Fu-Ling tea helps. I do not have health insurance and can not afford the $92.10 a month for my medication. I want to get involved and be an inspiration to those who are newly diagnosed. Its a very difficult thing to tell your family that you are ill and will never get better. So I wish to assist anyway I can. If that means giving myself up for experimental research I am willing to do that. Just let me know! kerryhuber26@yahoo.com Billings MT
Submitted by Paula at: October 26, 2012
I hv sle and was wondern if anybody knowes of a grant that is given to diisabilty for repairn my home woodrot and hm insuurance wont cover I dont qualify for any reg loans
Submitted by Jacqueline Ware at: September 18, 2012
Please mail me all of the information that you all have about Lupus. My name is Jacqueline Ware. 1317 Skoklo Way Venice Illinois 62090. Thanks in advanced
Submitted by Darlene at: May 5, 2012
Please send me more information on Lupus. What works and what does not. A list of doctors in the Houston, Texas area that specialize in Lupus. Also, where and how do I go about volunteering for research as a patient in any ongoing experimental study. My daughter was diagnosed with Lupus SLE in 2004. She has not been treated for the disease, no meds, until recently. She has had periodic flare ups but has mostly been in remission. She is desperate to have a baby. She's had numerous miscarriages and in the past year 2 tubal pregnancies. The first carried to 6-8 weeks, the last being this week. She was experiencing severe back pain, bleeding ears, fatigue. When the labs blood work results came back, she was told she had another tubular pregnancy at 3 weeks along. We realize she would be a high risk pregnancy, but she is willing to do whatever is necessary to be able to carry to term. If there is a specialist in the Houston area could you also send that information. My email address is: willihearfromu2@yahoo.com Thank you
Submitted by Maciel at: February 15, 2012
I was diagnose with LUPUS SLE in April 2004. How can I begin with my experience it was a long battle for me. I remember in December 2003 I was had a lot of hair lost but didn't think nothing of it b/c I had gave birth to my daughter in April 2003. I was haveing some joint pains 6 months after giving birth but I didn't think nothing of it I just thought it was b/c I was carring my daughter. I noticed I will get kneel down for something it was difficult for to get back up and once again I thought it was normal b/c I lived on the 5th floor and I walked up the steps maybe 2 or 3 times a day I thought that was the reason I be hurting. But when I started to lose weight rapidly and lost all my hair in matter of 3 months and I couldn't walk up steps. All I did was stay in bed with my baby. Lucky she was just on formula milk. My daughters father will leave everything close to me so I can feed her. That's one thing I don't know how I had the strength to feed my baby girl. I had a 6 year old boy that I had to make sure he went to school lucky me the school bus will pick him up where I could watch him from my bedroom window...There was always other kids there and parents at the bus stop. The nieghbors knew I wasn't feeling well. So they made sure my son got on the bus and got home. I thank them so much. I finally went to the urgent care I had my daughter and the nurse just looked at me and took me straight in to attend me. She immediatly called the doctor to see me they gave me fluids and they drew blood and when the results came back the Dr. said its a mircle u are still alive I was being sent to the hospital that's how bad my condition was. So I refuse to go in a ambulance. So I called my boyfriend at work and told him I being sent to the hospital. So he let work and picked up our son early from school. Then we was on our way to the hopital at cooperstown. I could remember the doctor telling me if I would have waited longer I wouldn't be alive. When I got to the hospital there was so many doctors waiting for already. So many tes was done. All this happen in March 2004 and in April 2004 I was diagnose with LUPES SLE. I was on so many medication. I had infalmatory kidney so I was on treatment. Then in 2005 I started to have chronic joint pains for about 2 years I could barely walk it was the worst time of my life but I fought back no matter wut yeah I had my days that I didn't want to fight my battle anymore. But I had to b/c of my kids. They will see me in pain and they will ask me mommy are u ok. And that right there I knew that I had to do it for my kids. I fought back my battle. Then I was doing better I went under treatment which was like a chemo the medication was called cytoxin wow that was very strong I had to go for treatment once a month I had to sit in that chair for 4 hours lucky I was given benadryl I will be asleep throughtout the treatment. That treatment was to see if my kidney will function back to normal. I still had joint pains still in and out the hospital and still fighting my battle with Lupus. Then in Jan 2008 my life was almost over I was in a coma for 6 days. All I could remeber was my dad talking to my mom telling her to give me a paper and a pen b/c I was trying to say something and I don't remember me wanting to say anything. I do remember my dad say that. So finanlly when I woke up my mom was next to me calling the nurse and doctors with such an excitment. All I said to my mom was lower down ur voice there's a lady next to us also in the room. I do remember going to the hospital and the doctor telling me I was going to be kept over night. The out come of all this was that I had kidney failure. I was on dialysis for 3 years and that was something I had to really get use to. Then in July 2010 I had an open heart surgery. My tricuspid and maltravalve was repaired. Then in July 2011 my older sister donated a kidney to me. And so far I'm doing good. My health is normal Lupus is in remission and life is getting better by the day. Those who has Lupus and your battling DON'T GIVE UP FIGHT BACK I DID I DEFEATED THE OBSTACLES....
Submitted by ruthie at: June 16, 2011
i have lupus and want to join the walk and either start my own campaign or join a organization. please send out more info on this matter lilbit7278@yahoo.com thank you and we all will conquer this struggle with love, faith, belief and GOD!!
Submitted by Peter Saengsutthi at: March 18, 2011
Anything is possible if we try and work together as a whole. There are many people in the world that wish to find a cure for this! Let's all work together guys. Email me at p.saengsutthi@live.com I'm no professional but I want to work together with the world to find a cure. I am willing to dedicate every second of my life to work with this disease until a cure is found.
Submitted by AMO at: November 18, 2010
Please get the word out and educate everyone you know about LUPUS. I am always surprised by the number of people who don't know about LUPUS. They may have heard about it, but only know it is a disease- yet, every person I know, knows someone with it. Email your Congressmen. Be your own healthcare advocate and educate your caretakers and doctors! Give charitable contributions towards scientific research. Research on LUPUS could also help find treatments and cures for other diseases. Donate your time to LUPUS organizations for advocacy and research, whether it be volunteering to be a patient (aka guinea pig) in an experimental study (I have been in 2) or it be begging for money to support the development of treatment protocols. Most importantly, become educated and spread the knowledge.
Submitted by LUPUS Awareness & Research at: September 21, 2010
Please do what you can and SUPPORT LUPUS RESEARCH, every little bit counts. Stay Strong, Awareness Will Lead Us to A CURE! ~Keith
Submitted by Cynthia Latham at: September 10, 2010
Written on September 10,2010 I have Lupus and I will support the cure of Lupus.
Submitted by Mary Ellen Alberto at: May 19, 2010
I have Lupus and I will work and support the cure for Lupus.
Submitted by Rhia at: May 17, 2010
I just made this letter much, much longer with my own battle with Lupus, Raynaud's, MCTD and Sjogren's. I have suffered many,many years well before anyone figured out why might be wrong. Finally, two years ago a very young, very intelligent primary care doctor finally was able to put the things together that got me diagnosed. We finally know what is wrong, and now I am in the fight of my life, to fight for advocacy, research, a possible realm of new medications,possibly a cure, and/or ways to keep from getting these dreadful, uncureable, often mysterious illnesses. Lupus almost took my life only 2 months ago due to severe complications that began with a gallbladder surgery. 7 weeks later, after several surgeries, many, many tests, many medications, including 2 units of blood,a slit in my liver, bile leaking into my abdominal cavity causing fluid around my lungs, my heart, ulcerations within my small intestine, and even another heart attack, I came home so weak I was literally unable to get off the bed or sofa myself to even to go the bathroom. It took me another 6 weeks at least at home to regain any of my strength. I am trying to get a local group together here in my hometown as well as get all I can going to help with research, education, medication, help for the victims, including our caretakers, who are also very much victims of these life altering, and often life taking diseases.
Submitted by Mary at: April 11, 2010
Please support the alliance for lupus research! We need to find a cure. The first step is to lend a helping hand.
Submitted by Al at: January 20, 2010
Please send me more information on Lupus. What works and what does not. A list of doctors in the Seattle, WA area that specialize in Lupus.
Submitted by andrea at: January 11, 2010
let´s fight for a cure! we can do it!
Submitted by Alice Downing at: October 6, 2009
Please continue to support Lupus research, we desperately need the help!
Submitted by Nancy at: October 3, 2009
I have cutaneous lupus and have found very little about it and very few doctors that are aware of it. My dermatololgist told me that I was the worse case he's ever seen but has no answers. It seems like I'm in unchartered waters and everything is trial and error. There needs to be a better plan for treatment. I will e-mail anyone I can.
Submitted by Julie at: October 1, 2009
I have Lupus. How do I become part of the research?
Submitted by Kelly at: October 1, 2009
Dear Lupus research team I really enjoyed walking for a cure for Lupus. I would like to know what I can do to help. My friend Liz has Lupus and I want to know more about Lupus so please keep sending me info about Lupus and let me know how I can help and what to do.
Submitted by Brenda Pone at: October 1, 2009
I concure, research much continue

 

 

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1.5 million

people in the U.S. have Lupus.

90 million

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