LUPUS FOUNDATION OF NORTHERN CALIFORNIA 

July 30, 2012
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UPCOMING EVENTS:

  

Heads up for Brown Bags!

 

From August through October, the LFNC will be holding brown bag sessions on the following topics:

  • Lupus self management
  • The impact of health care reform on lupus patients.

Our brown bags are bring-your-own-lunch small group meetings to discuss specific issues. They're free! We will let you know the exact dates as soon as we schedule it. Be on the lookout!

 

Benlysta Webcast/Teleconference Series

Presented by Human Genome Sciences/GlaxoSmithKline

Aug 22 | Sep 26 | Oct 24 | Nov 28

8pm ET 

Tune in from home!   

 

A different lupus-related topic will be addressed each month such as Benlysta and the infusion process, how to strengthen communications with your doctors, tips for managing lupus, and information about financial assistance.

To register for these free events, call 1-877-423-6597   

 

 

 

Information contained in this e-Newsletter should not be considered a substitute for professional diagnosis, treatment or management of S.L.E. and symptoms by a physician.
 
 
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Editor: Rene Astudillo
Editorial Assistant: Spandan Chakrabarti

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You are receiving this newsletter because you have subscribed or have participated in our programs or events.  We respect your time and privacy. If you prefer not to continue receiving the newsletter, you can click on the "safe unsubscribe"  button below.  We hope, however, that you will opt to remain on our newsletter list for important information and life-saving tips that you or someone you know may benefit from now or in the future.
 
Woman, Olympian and Lupus Fighter
Shannon Boxx (Olympian lupus survivor)
US Soccer Olympic team midfielder and Gold medalist Shannon Boxx refuses to let her lupus define who she is. She is both a star Olympic athlete and an inspiration to those living not just with lupus but any chronic illness. Boxx was diagnosed with lupus in 2007, but hasn't let it slow her down. How does she do it? By being good at managing lupus.

 

"I'm feeling really great," she said in a telephone interview from England, where the team arrived two weeks ago. "I want people to see I'm playing through this and to encourage them to stay active. I never want to use the disease as an excuse."[...]

Most days, Boxx says, she feels fine and "just like everyone else on the team." She doesn't get flare-ups often, but when she does, she says she has no choice but to go to bed.

"Hopefully that won't happen here," she says. "I'm not nervous about it. I have gotten better at knowing when it's coming on."

Getting better at knowing when it's coming on, and how to deal with it when it does. That's the reason why the Lupus Foundation of Northern California provides patient education classes, brown bag lunch sessions, support groups and conferences - all focused on helping lupus patients not just survive lupus but to thrive with it.
 
Just What is a Clinical Trial?
When Benlysta was approved last year as the first lupus drug in half a century, it was a time of celebration in the community. But why did it take so long? What is involved in getting a drug to market? Specifically, what are clinical trials? Sure, we know it's human trials of drugs awaiting FDA approval, but very few have an idea about just how involved, intense and time consuming the process is. Even more importantly, we lack information about how clinical trials affect patients involved in the trial and the surrounding communities.
 
So when the Pharmaceutical Research & Manufacturers of America (PhRMA) and New York Health Works hosted a press conference to highlight the awareness of the clinical trial process, we were happy see a lupus patient as the patient advocate on that press conference.  
 
Clinical Trials Timeline Rev.mov
Clinical Trials Timeline
 
Our national research partner, the Lupus Research Institute, has highlighted a detailed report on the patient and economic impact of clinical trials. You can read the press release here, or the entire report here.

 

Still Seeking Lupus Patients for Clinical Trial of a New Investigational Medicine
Male and female patients with Systemic Lupus Erythematosus (SLE) are being sought for a clinical study looking at a possible benefit of an investigational medicine.  The study site is in Roseville, California and in the Sacramento area and will last approximately 56 weeks.

In order to be eligible for the study, patients must be:
  • Between the ages of 18 and 75
  • Experiencing active disease during the time you join the study
  • Receiving treatment for SLE
  • There are also some other medical criteria that must be met for all patients wishing to join the study.  A number of screening tests will determine suitability for the study.  
If you or someone you know from the Sacramento area may benefit from this study, please contact Sharon Harp of Med Investigations directly at (916) 966-7452.
Help Us be Recognized for Our Hard Work
We could be the top nonprofit on the list of Great Nonprofits for the health category. How cool would that be? If you have been involved with the Lupus Foundation - whether as a client, volunteer, donor or supporter - you know how important the work we do with your help is for the Northern California Lupus community.

You can make sure that LFNC gets the word out on lupus to even more people by giving us a great review. If you believe that together, you and LFNC make a difference, please click here to give us a great review with 5 stars! We are currently competing for the top spot in the health nonprofits category. (Last time we checked, we were No. 4 on the leader board across the U.S.!) 

In 2010, the Lupus Foundation of Northern California was among the  Top 15 Nonprofit Organizations in the entire U.S. in a campaign launched by GreatNonprofits. With your help, we can continue with this distinction in 2012!

Won't you help us participate in the awards by posting a review of your experience with us? All reviews will be visible to potential donors and volunteers. It's easy and only takes 2 minutes!

If you believe that our work is important, and that we do it well, please visit this page and give us a great review.