Lupus Foundation of America Announces Development of LFA-REAL System

For those of you haven’t heard, the Lupus Foundation of America announced that it is funding and leading the development of LFA-REAL (Rapid Evaluation of Activity in Lupus) System. LFA-REAL is a two-part system that determines a treatment’s impact on a patient’s daily life through a series of questions and observations. After being approved for clinical use, the LFA-REAL system will enable healthcare providers to make evidence based and targeted treatment decisions allowing for overall and organ specific assessment.  LFA-REAL will address major challenges in disease management, specifically in lupus treatment, and could potentially improve medical care and quality of life for those living with lupus. 

LFA-REAL will be designed so that it can be accessed easily, through the web and mobile applications.  Although measurement systems like the one used for LFA-REAL are used for other diseases, none currently exist solely for Lupus.  Currently in the midst of the research and design phase, LFA-REAL is estimated to be finished by 2017.

The LFA-REAL system will be designed to: reduce unnecessary treatments and administrative costs, provide efficient and cost-effective methods to evaluate disease activity in lupus patients to allow clinicians the use of the most targeted treatments, provide necessary information that supports insurance coverage of future treatments, and display treatment effectiveness and measure improvement. 

Over the next three years, the Lupus Foundation of America plans to develop and test the LFA-REAL system at numerous locations. 

More information regarding the specifics of the LFA-REAL system can be found online at: lupus.org/LFAREAL.  

7 Springtime Exercise Tips for Lupus Patients

            Despite tonight’s upcoming flurries, it’s hard to believe springtime’s legitimacy. Fortunately, spring is in full swing and the incoming warm weather promises sunshine, flowers in bloom and hints of summertime. Beautiful weather only increases our energy and desire to stay active, but it can be difficult for those with lupus to create a springtime exercise regimen that supports and benefits them. So instead of jumping in blindly, here are a few tips to ease yourself into the idea of working out regularly.

            Before beginning any exercise program, lupus patients should check in with their primary physician or physical therapist to discuss what would work best for them. When discussing, keep in mind how much physical activity you’ve done prior to now and that warmer weather is more difficult on your body. Before beginning anything too strenuous keep in mind these helpful hints:

  1. Low impact exercises are your best friend. Swimming, bicycling, rowing, walking, yoga, low-impact aerobics, stretching and Pilates not only tone your muscles but minimize your joint aggravation and prevent osteoporosis.
  2. Remain as active as possible and vary your routine. Muscles that aren’t worked won’t progress and strengthen. By varying your workout, you can focus on building muscles groups throughout your entire body.
  3. Listen to your body and pace yourself. If you find yourself more motivated to lace up your sneakers first thing in the morning, then go! But if you’re experiencing stiff joints or exhaustion, wait until the afternoon. Although the positive points on exercising are numerous, don’t push yourself too hard. You need a good balance that allows you proper rest and recuperation time. 
  4. Set reachable goals. You don’t need to start marathon training to feel accomplished. When first starting out, set simple goals like walking or swimming for a few minutes. Not only will you feel accomplished, that feeling will multiply as your goals increase in difficulty.
  5. Bring a friend! Exercising together allows you to keep each other motivated and allows you to squeeze in extra quality time.
  6. Don’t be afraid to give yourself a break. There may be some days when you don’t think you can exercise and that’s okay. If you begin experiencing pain, don’t push yourself and risk injury.
  7. If you’re exercising outdoors, cover up. We all know sunlight can trigger flares, so when exercising outdoors opt for long-sleeved shirts, long pants, a hat and lather up on the sunscreen.

Interested in finding more springtime exercise tips? Check out “Five Things People With Lupus Should Know Before Starting a Springtime Exercise Routine” here: http://www.lupus.org/blog/entry/5-things-people-with-lupus-should-know-before-starting-an-exercise-routine. Enjoy the warm weather!

Sign up now & save on our Purple Passion Wine Tasting

We know you’ve seen it on social media: Facebook posts announcing a 50% off discount with a promo code and tweets encouraging registration.  However, if you haven’t clicked on a link or recently checked out our events page, you may not know much about our Purple Passion Wine Tasting. 

            On Thursday March 27th, attendees of our Purple Passion Wine Tasting can look forward to a night of delicious hors d’oeuvres, sampling new wines, and raising Lupus awareness at the Oak Hill Restaurant on the Green in Norwalk.  Tickets are priced at $100; VIP tickets at $125.  However, by typing in our Purple50 promo code when registering before March 14th, tickets are only $50 and VIP tickets are $62.50. 

            On the menu for the event are vegetable spring rolls, mini crab cakes and sun dried tomatoes and mozzarella crostini among other delicious appetizers.  In addition to a memorable night of wine, food and music, attendees will receive a complimentary Lupus wine glass.  Interested in registering?  Follow the link provided, call 860.269.6240 or email our office at office@lupusct.org.

http://www.lupus.org/connecticut/events/entry/purple-passion

More News on Capitol Hill

At the beginning of the month we talked about Capitol Hill and the Omnibus Appropriations Bill which was increasing the amount of funding going into many different avenues that are used for supporting lupus and lupus research. We mentioned that the National Institutes of Health (NIH) was receiving a $1 billion increase, bringing their funding to $29.9 billion. While this increase is great news, it’s been noted that this increase is only restoring funding that has been lost over the years. When adjusted for inflation, the budget for the NIH is 22.4 percent lower than it has been in the past 10 years.

It is still great to see that this funding is moving in the correct direction despite the fact that it is lower than it has been in the past. Also included in the bill was more general funding going to lupus other than the NIH, but the biggest issue is where the NIH funding goes. The NIH funds most lupus research, which means that the reduced funding has directly affected lupus research. The number of grants available has fallen to the lowest in the past 15 years. NIH funding is extremely vital to lupus research and while we have made progress it is important that we continue to push for this funding to be increased. The fact that lupus has become something that lawmakers are starting to recognize is still an extremely positive point. Now that lupus is on the radar of lawmakers we can continue to show how important it is and keep to get all the help we can in solving this cruel mystery.

To read more about how the NIH funding is lower than it has been in years you can check out the Lupus Foundation of America’s Website.

As always, for more stories and events related to lupus, be sure to follow us on Twitter @CtLupus and @LupusOrg, and by Liking the Lupus Foundation of America Connecticut Chapter on Facebook.

Wanna learn more about Lupus or get info about our next big event? Check out the Connecticut Chapter’s Website or the national Lupus Foundation of America’s Website.

Lupus In Children – Difficulties and Future Solutions

Lupus is a chronic disease with continuous flares and remission, this is one of the things that makes it so devastating. Lupus never really goes away so it’s even worse to find out a child has lupus. Lupus can make it difficult for a kid to be a kid, interrupting school, forcing responsibility with all the medicines and making it tough just to play outside. Juvenile lupus is also difficult for parents who have to watch their child in pain. Just like adult lupus, there aren’t many things that you can do when dealing with childhood lupus other than taking the normal precautions to prevent flairs.

Despite the lack of control parents have over lupus there is a new study that has been working on a way to make life better for children with lupus. The study involved 12 individuals who had developed lupus during childhood. The study used a treatment of rituximab and cyclophosphamide over an 18-month period and showed that this can provide continued improvement of lupus symptoms for at least five years. The patients were given the medications two weeks apart at the start of the study, then six weeks apart and then eighteen months later. Using the Systemic Lupus Erythematosus Disease Activity Index, doctors were able to measure lupus disease activity to find that this treatment resulted in improvement. What this meant was that the amount of prednisone needed to keep lupus at bay in the patients was able to be reduced to below 10 milligrams a day in eight of the twelve patients. This reduction in steroid use allows for a major reduction in the immediate side effects of steroid use and  the long term complications that can come from steroid use.

While this study does show promise it was only a small study and a much larger study would be required to make this treatment more widely available. The study still shows promise for the quality of life for children with lupus. For now when it comes to caring for children with lupus, the best thing to do is to stay positive. It can help to talk to your child’s doctor so you can better understand lupus or try to reach out to others in the same situation. You can ask a hospital worker to connect you or even connect using the LFA’s Message board. Lupus is always difficult to deal with, but we are working every day to solve this cruel mystery and improve the quality of life for all of those with lupus.

You can read more about the study at The Lupus Foundation’s Website or if you are or know a parent that has a child with lupus, you can check out this article on Parental Support.

As always, for more stories and events related to lupus, be sure to follow us on Twitter @CtLupus and @LupusOrg, and by Liking the Lupus Foundation of America Connecticut Chapter on Facebook.

Wanna learn more about Lupus or get info about our next big event? Check out the Connecticut Chapter’s Website or the national Lupus Foundation of America’s Website.

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Keeping Our Promises: Accelerating Medicine’s Partnership

At the beginning of the year we mentioned how the Lupus Foundation of America (LFA) was looking to speed up the process of developing new treatments for lupus. LFA is now partnering with the National Institutes of Health (NIH) on a new program with this exact goal in mind. The program is called the Accelerating Medicines Partnership and is a collaboration between the NIH, 10 bipharmaceutical companies and non-profit health organizations such as the LFA. The goal of this program is to increase the number of new treatments and diagnostics for patients of various diseases including lupus.

The program aims to do joint research to identify and validate promising biological targets of disease. They hope to find molecular indicators of disease known as biomarkers, such as changes in genes, proteins and other molecules which show predisposition to disease and disease progression. Finding these markers will give possible targets for therapies and ways to recognize disease and disease progress better. Currently FDA drug approval takes over a decade with a failure rate of over 95%, causing successful drug therapies to cost upwards of $1 billion (one of the reasons there is currently only one drug specifically for lupus.)

Sandra C. Raymond, LFA President and CEO says “In recent years there have been a number of scientific findings and developments that have placed us at the brink of breakthrough, and greater collaboration among all stakeholders is needed to maximize comprehensive efforts to bring lupus under control.” Other than the collaboration on this project, a critical and groundbreaking element of the partnership is the agreement that the data and analyses generated will be made publicly available to the broad biomedical community. This project sets amazing groundwork for getting more lupus treatments out along with treatments for the other diseases included in this program. This is a great project which will hopefully hold great results and help to improve the conditions of those living with disease.

To read more about this you can check out the NIH Press Release, The LFA Press Release, or the page for the Accelerating Medicines Partnership at the NIH website.

As always, for more stories and events related to lupus, be sure to follow us on Twitter @CtLupus and @LupusOrg, and by Liking the Lupus Foundation of America Connecticut Chapter on Facebook.

Wanna learn more about Lupus or get info about our next big event? Check out the Connecticut Chapter’s Website or the national Lupus Foundation of America’s Website.

More Good News From Capitol Hill!

If you remember, way back on the 25th of June we had more than 250 activists on capitol hill advocating for lupus funding and on July 11th the Senate Appropriations Committee approved a draft of the 2014 fiscal year Labor-Health and Human Services-Education appropriations bill. The bill included a possible increase of $307 million for the National Institutes of Health; $2 million to continue The Lupus Initiative, which educates physicians and other health professionals about lupus; and $4.43 million to the National Lupus Patient Registry at the Center for Disease Control and Prevention (CDC) to help with their registry project and support additional studies.

It is now 2014 (if you didn’t know) and to continue with the great start to the new year, the House and Senate approved the Omnibus Appropriations bill, a bundle of 12 appropriations bills which includes the Labor-Health and Human Services-Education bill which includes many of the lupus programs that we advocated. The CDC is receiving $5.5 million, nearly 1 million more than they had originally drafted and 1.9 million more than they had received the year before. The Department of Defense’s Peer-Reviewed Medical Research Program has seen an increase of $150 million bringing the pot of money for the program to $200 million, funds that the Lupus Foundation of America will be encouraging the research community to apply for. The National Institutes of Health will be receiving a $1 billion increase to $29.9 billion. Finally, to continue the great work education healthcare professionals, The Lupus Initiative received it’s $1.2 increase to $2 million.

This is all really great news for the lupus community. It’s great to see the continued and increasing support that we are getting from lawmakers to keep up the great research being done on lupus. This is also a great victory for all the activists that were on capitol hill this past June! We expect this all to pay off and to see great breakthroughs in lupus research this year!

As always, for more stories and events related to lupus, be sure to follow us on Twitter @CtLupus and @LupusOrg, and by Liking the Lupus Foundation of America Connecticut Chapter on Facebook.

Wanna learn more about Lupus or get info about our next big event? Check out the Connecticut Chapter’s Website or the national Lupus Foundation of America’s Website.