Walk for Lupus Now

Walk for Lupus Now season is underway, with walks taking place across the country. Funds raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.

Many Walk for Lupus Now participants have lupus, or are family, friends or caregivers to someone who has lupus. People often walk "in honor" of a friend or family member who has lupus, or "in memory" of someone who lost his/her battle with lupus.

See if there’s a Walk for Lupus Now walk in your community. Or one that’s close by.

If there is no Walk near you, you can still help the LFA by setting up your own fund-raising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Since the weather is turning cooler, why not take a walk, and help the Lupus Foundation of America find a cure for lupus.

Enjoy your weekend, Wick

Marathoner Raises Money to Benefit People Living with Lupus

Wanted to give a shout out to Brian in Michigan. Brian writes a blog called Four Paws, Three Wheels, 2 Legs, One Cause.

Brian is a runner. A runner who knows a lot of people who are living with lupus. So he decided to help.

On behalf of the Lupus Foundation of America, Brian completed a 50 mile ultra-marathon in Michigan on September 15, finishing in 28th place out of 66 participants. To date he has raised more than $4,300. Brian will continue to accept donations on his site thru October 15.

Definitely check out his blog. Look at his pictures. If you’re able to, support his efforts. And if nothing else, learn more about Brian and why he decided to help those who are living with lupus.

The Lupus Foundation of America appreciates your efforts, Brian.

Until next time,
Wick

Lupus Foundation of America Chapter Spotlight: The LFA Georgia Chapter

I wanted to take this opportunity to shine a spotlight on one of the Lupus Foundation of America's chapters. Specifically, the LFA Georgia Chapter.

Last year was a year for new growth and accomplishment for the LFA Georgia Chapter. In a short time, the LFA Georgia Chapter has successfully positioned itself as the go-to resource for lupus in the state of Georgia.

Some accomplishments

• More than 700 walkers and 80 teams raised $125,000 in the Chapter’s inaugural, city-wide Walk for Lupus Now™. Read more about the Lupus Foundation of America Georgia Chapter Walk.
  
• The Chapter successfully launched a campaign to be involved with the inaugural ING Marathon. Team Lupus, comprised of 23 runners, raised $9,000 last March!
  
• Educated and supported thousands of people through support groups, education events, and health fairs.

Those are just a few of the things they have accomplished. Imagine what they could do if they had more help!

Volunteer opportunities

• Join the 2008 Walk, ING Planning Committee or the Drive for Lupus Now Golf Tournament Committee. Help us increase team participation and corporate sponsorships.
  
• Join the new Advocacy Committee to help educate state and federal officials about lupus and campaign for resources to fight against this disease.
  
• Help raise funds for the chapter with contacts or ideas you may have for fund-raising events or promotions.
  
• Join a Support group or help us form a new support group. There are many areas in Georgia that are without support groups, or in need of new leaders.

If you live in the state of Georgia and want to learn more about these, and other opportunities to help all people affected by lupus, please contact the Lupus Foundation of America, Georgia Chapter. You can reach them online at http://www.lfaga.org/ or via email at info@lfaga.org.

Until next time, Wick

Clinical Trials Chat Rescheduled for this Wed., Sept. 26

I am happy to report that the Clinical Trials & Lupus Webchat has been rescheduled for this Wednesday, September 26 at 3 p.m. EDT.

As a reminder, Mr. Ken Getz, the founder and Board Chair of CISCRP, the Center for Information and Study on Clinical Research Participation, will serve as the host.

CISCRP is a non-profit organization focused on educating and informing the public about clinical research participation. CISCRP is not involved in recruiting patients for clinical trials nor is it involved in conducting clinical trials.

Whether you realize it or not, clinical trials play an important role in public health. There have been no new drugs developed to treat lupus in more than 40 years. The only way to test up and coming drugs is through clinical trials, where everyday folks, like you, agree to participate in a medically controlled setting to see what drugs may work.

With that in mind, we look forward to seeing you at Wednesday's (technically error-free!!) chat. Until next time.

Wick

Have you heard of MAPRx?

Advocacy and outreach efforts play an important role for the Lupus Foundation of America (LFA). As such, the LFA strives to ensure that lupus patients have access to the medical care, treatments and medications necessary to manage the symptoms of this disease.

In an effort to assist people with lupus who are Medicare-disabled and/or over the age of 55, the LFA established the Medicare Access for Patients-Rx (MAPRx) coalition. MAPRx is a coalition of 40+ patient, family caregiver and health professional organizations committed to safeguarding the well-being of patients with chronic diseases and disabilities under Medicare Prescription Drug Coverage. MAPRx member organizations collaborate with national and state policymakers to ensure that beneficiaries have the access to the medication therapies they need and deserve.

Currently, MAPRx is working to help people with lupus choose the Medicare Prescription Drug Plan in 2008 that best meets their individual drug needs. MAPRx is also reaching out to identify lupus patients who may qualify for the Extra Help assistance available from the government to cover drug plan costs.

Learn more about the Medicare Prescription Drug program (also called Medicare Part D). Visit the MAPRx website.

Study Indicates Significant Work Loss Associated With Lupus

Recent research on work loss associated with systemic lupus erythematosus (lupus), funded in part by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, estimated that almost three-quarters of the study’s 982 participants would stop working before the usual age of retirement, and that half of those who had jobs when they were diagnosed (during their mid-30s, on average) would no longer be working by the age of 50.

This research, led by Edward Yelin, Ph.D., of the University of California, San Francisco, involved people between ages 18 and 64. In addition to evaluating work loss by age/time frames, the scientists examined risk factors for job loss, including:

• demographics (age, sex and education)
  
• socioeconomic status
  
• disease status
  
• general health
  
• functional status (how well the individual is able to function and carry on typical daily activities)
  
• mental/cognitive status
  
• health care use
  
• employment information.

They determined that demographics and work characteristics (the physical and psychological demands of jobs and the degree of control over assignments and work environment) had the most impact on work loss.

Two data-analysis tools (the Kaplan-Meier method and the Cox model) allowed scientists to study data collected over two years and to reliably estimate long-term patterns of work loss. The long-term estimates were calculated using information from patient medical history, as well as data from baseline interviews with each study participant and follow-up interviews one year later. The scientists are planning a subsequent study that will correlate specific lupus manifestations to their impact on changes in employment.

Among studies of the work dynamics of people with lupus, this research is considered to have the largest and most diverse study population to date. The authors believe the results are therefore more statistically precise and more representative of lupus patients than the results of previous studies.

The State of California Lupus Fund, the Arthritis Foundation, the American College of Rheumatology/Research and Education Foundation, and the Agency for Healthcare Research and Quality also supported this study.

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the Department of Health and Human Services’ National Institutes of Health, is to support research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.

For more information about NIAMS, call the information clearinghouse at 301-495-4484 or 877-22-NIAMS (free call) or visit the NIAMS website at http://www.niams.nih.gov/index.htm

Bikers Raise Awareness and Funds for Lupus!

This summer, two separate bike riding efforts were undertaken to benefit the Lupus Foundation of America. Geoff Thomas from Australia is well on his way to completing a “four corners” tour of the United States, while this Saturday Dylan Trakas and James Mason will complete their “Bike Across the LupUS.”

Dylan and James were able to raise more than $19,000 for the LFA and biked over 3,000 miles in a little over three months. You can still contribute to their goal and the LFA by visiting their website, www.acrossthelupus.com. There will be a reception this Saturday, September 15 in Charleston, South Carolina in which they will present the LFA with a check of the donations they have received.

Geoff Thomas is on the last leg of his four corners journey, and will be arriving in DC any day now! While he is in DC, he will present a talk at the Australian Embassy to describe his cycling efforts. Visit his website, www.bikeusa2007.com, to see more of Geoff’s media coverage and journey details.

A big thanks to Dylan, James and Geoff for their hard work and for their efforts in raising awareness – and money – to benefit everyone who is affected by lupus.

Clinical Trials Chat Postponed / To Be Rescheduled

Hey everyone ...

wanted to let you know that due to some technical difficulties that occurred about 5 minutes in to yesterday's Webchat on clinical trials & lupus, the chat was postponed and will be rescheduled at a later date.

Sorry about the inconvenience. It was certainly unexpected. Check back here to see when we have rescheduled it.

Until next time ... Wick

Clinical Trials & Lupus: Should You Participate In One?

Morning all ... LFA’s blogger-at-large, Wick Davis back again. Wanted to give you a quick reminder about this month’s Webchat. This afternoon, Wednesday, September 12, at 3 p.m. EDT, Mr. Ken Getz, the founder and Board Chair of CISCRP, the Center for Information and Study on Clinical Research Participation, will host a Webchat on Clinical Trials & Lupus.

CISCRP is a non-profit organization focused on educating and informing the public about clinical research participation. CISCRP is not involved in recruiting patients for clinical trials nor is it involved in conducting clinical trials.

Whether you realize it or not, clinical trials play an important role in public health. There have been no new drugs developed to treat lupus in more than 40 years. The only way to test up and coming drugs is through clinical trials, where everyday folks, like you, agree to participate in a medically controlled setting to see what drugs may work.

During this chat, you’ll learn: how to evaluate a study; questions to ask before you participate; your rights as a participant; and much more. The LFA intends to increase its clinical trials content on the lupus.org Website over the next year. So you’ll want to check back often.

We hope you can join us for today’s Webchat. Until next time.

Making the Grade for Good Health

Here are a few tips to help make the transition from family life to college living something you can manage.

• Make your health your primary concern.
  
  
• Share information about your condition with school health officials and call or email your regular doctor if you have any concerns. Have him or her recommend a health care facility near your campus
  
  
• Ask at the office for students with disabilities whether the school has nap rooms, quiet areas or other places to rest on campus.
  
  
• Develop a good support system with roommates and classmates, as well as family and friends back home. Remember: you’re not in this alone.
  
  
• Ease into your college routine. Start with a light course load until you get used to the campus environment. Also consider mixing in-class coursework with online classes, which may offer you more flexibility.
  
  
• Do your best to make lifelong friendships and grow into a well-rounded young adult. It’s the best part of the college experience.

* Adapted from the Mary Dixon Lebeau article in the Summer 2006 issue of Lupus Now.

Butterflies Over Hollywood

The Lupus Foundation of America (LFA) and Maybelline® New York are excited to present Butterflies Over Hollywood -- a very special, star-studded event to raise awareness and funds for lupus, a debilitating and life-threatening disease that affects an estimated 1.5 - 2 million Americans, 90 percent of whom are women.

On Saturday, September 29, 2007, more than 300 hand-picked celebrity and VIP guests will attend the Butterflies Over Hollywood soiree, which will take place at the historic El Rey Theatre in Los Angeles. The exclusive event will be hosted by Malcolm Jamal-Warner (The Cosby Show) and Tomiko Fraser (Supermodel, Face of Maybelline® New York). Special entertainment will be provided by Ruth "Silky" Waters and Best Kept Secret.

With the help of one of Hollywood’s top event planners, the El Rey Theatre will be transformed into a spectacular Cotton Club-themed night of glamour with live performances, a top DJ, signature cocktails, gourmet appetizers, and more. The event is sure to be a heavily covered event by top media outlets and one that Hollywood will be buzzing about for months.

Weather’s Starting to Cool Down … Why Not Take A Walk?

I can’t believe it’s already September. Where did the summer go? Hopefully you had a good summer, wherever you happen to be.

Autumn is my favorite time of year. Leaves change colors, the smell of pumpkin begins to fill the air, and the weather finally cools down. It’s perfect weather for getting outside and getting fresh air.

Experts say one of the easiest ways to get exercise is to walk, 30 minutes a day, several days a week. So why not take a walk, and help the LFA find a cure for lupus?

Walk for Lupus Now season is upon us, with walks taking place all over the country. Funds raised from Walk for Lupus Now Walks will support lupus research, education programs, and patient and family support services. You can help people with lupus in your community who need your help.

Many Walk for Lupus Now participants have lupus, or are family, friends or caregivers to someone who has lupus. People often walk "in honor" of a friend or family member who has lupus or "in memory" of someone who lost his/her battle with lupus.

See if there’s a Walk for Lupus Now walk in your community. Or one that’s close by.

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park.

Together, we can find a cure.

Wick