Check Out the Walk for Lupus Now Events This Coming Weekend in New York, North Carolina, Texas, and Utah

As you've heard me say before, it's now Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place this weekend, May 2-3.

• New York City, New York -- May 2, 2009
• Charlotte, North Carolina -- May 2, 2009
• Salt Lake City, Utah -- May 2, 2009
• Houston, Texas -- May 3, 2009

If you live in one of these areas, I certainly hope you will join us. Or if you have friends or family in one of those areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

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

Until next time.

Lupus Blog Spotlight: Looney Lupie Lady

I would like to share a lupus blog with you. It is called Looney Lupie Lady.

Here's a little bit about Looney Lupie Lady ... in her own words.

"I am a Christian lady, who has been married to a wonderful man for almost 14 years. We have been blessed with 5 children. The looney part comes in where I homeschool this cat herd! The children have a suspected mitochondrial disorder, so they all have medical and learning issues. I am also working on editing my first book and E-book. I hope to start giving workshops about homeschooling in the near future."

"The lupie part comes in when I began feeling ill. I wrote it off as stress. Soon there was no getting around it; I was sick. I went for answers. It took some time and repeated trips to the doctor, but I was diagnosised with lupus on my 33rd birthday. I also found out that I have celiac disease, Reynaud’s, Sjogrens, and Mixed Connective Tissues Disease."

"So why am I here? There is no reason to reinvent the wheel! I felt the Lord wanted me to reach out to others. Share our successes and failures. I hope to review equipment and items marketed to the disabled. Find ways to save money. After all, diseases like lupus require expensive medication every day of our lives, doctor's visits, and hospitalizations."

"Let us make it each day ... walking by faith, trusting in God to provide."

If you have some time, swing by Looney Lupie Lady and say hi to her.

That's the lupus scoop from my end.

Until next time, Wick

50 Years Without New Lupus Treatments Unacceptable!

Dear LFA Friend:

I volunteered to serve as a national spokesperson for the Lupus Foundation of America (LFA) soon after my younger sister, Shneequa, was diagnosed with a very serious case of lupus that affected her brain.

My sister was a strong woman who endured much, but somehow always managed to maintain her beautiful smile. Shneequa recently lost her 12-year battle with lupus, passing away quietly on March 18. My memories of Shneequa are very precious to me and to our family. And we will continue to fight for every woman, man and child with lupus until we find a cure.

After Shneequa was diagnosed, I quickly learned how each person’s experience with lupus is unique. I also saw firsthand the side effects from some of the current lupus treatments. These side effects are unacceptable, and some can even be worse than the disease itself. It is hard to understand why it has been 50 years since the Food and Drug Administration (FDA) approved a drug to treat lupus. The lack of new treatments is frustrating to me, and likely to you, as well.

But certainly it is not due to lack of trying by many researchers around the world. Rather, it is due to the complicated nature of the disease.

I want you to know that the LFA is asking the tough questions and working to bring down the barriers that have obstructed lupus research in the past. The LFA research program awards grants to fund studies in important research areas that previously were neglected or underfunded. But last year we were able to fund only one in four worthy proposals submitted by lupus investigators.

It is only with your support that we can unlock the answers to this disease and change the future for those living with lupus. Your special tax-deductible gift to the Lupus Foundation of America will enable the LFA to support critically needed studies to understand the causes of lupus, develop new, more tolerable and effective treatments, and ultimately, find a cure for lupus.

Shneequa has been, and will always be, my inspiration. She is the reason that I continue to advocate at the state and federal level to increase government funding for lupus research. Through research, there is hope. Please make a special tax-deductible gift today so the LFA can provide hope to all people with lupus, and to the families and caregivers of those who are fighting this challenging disease.

Thank you for taking time to read my message, and thank you for your continued support of the Lupus Foundation of America.

Sincerely,

Tomiko Fraser Hines
LFA National Spokesperson and Shneequa Fraser’s big sister

Check Out the Walk for Lupus Now Events This Coming Weekend

As you've heard me say before, it's now Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place this weekend, April 25-26.

• Atlanta, Georgia -- April 25, 2009
• Dallas, Texas -- April 25, 2009
• Charleston, South Carolina -- April 26, 2009

If you live in one of these areas, I certainly hope you will join us. Or if you have friends or family in one of those areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

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

Until next time.

Check out the LFA's Updated "Learn About Lupus" Section on Lupus.Org

In preparation for the launch of the Ad Council campaign on lupus, the Lupus Foundation of America (LFA) updated the homepage of the lupus.org website. Part of that update included the renaming / reordering of the website's navigation.

Let me highlight one of the bigger changes we made.

"About Lupus" was renamed "Learn About Lupus." This section features updated content which more closely matches the LFA’s new printed materials. In "Learn about Lupus," you fill find the following content topics.

• Understanding Lupus
• Diagnosing Lupus
• Treating Lupus
• How Lupus Affects the Body
• Living with Lupus
• Coping with Lupus
• Men and Lupus
• For Parents of Children Living with Lupus
• Center for Clinical Trials Education

As you might imagine, we’re very excited about the coming changes to lupus.org, and we think you will be too. So whether you’re new to our site, or you’re a returning visitor, we look forward to providing you with a positive online experience.

Have a great Monday.

Walk for Lupus Now Events / Upcoming Patient Education Event in Detroit, Michigan

Morning everyone ... I think spring has finally arrived here in DC. Going to the high 60s / low 70s today and tomorrow.

I'm glad tomorrow will be nice because it's the 3rd annual Walk for Lupus Now event in DC, which will benefit the Lupus Foundation of America, Greater Washington Chapter. I am a team captain, and my team is called The LuperHeroes.

We also have a Walk for Lupus Now event in Raleigh, North Carolina this Sunday, April 19. If you live in the area, and can make it, please do.

If you're in the Detroit, Michigan area, I wanted to tell you about an upcoming patient education seminar.

Living with Lupus: An Education Program for people with lupus and their families
Saturday, April 25, 2009
Registration opens at 11:30 am
Program from 12:00 pm -3:00 pm
Children’s Hospital of Michigan, Board Rooms
3901 Beaubien Street
Detroit, Michigan 48201

Register now! By email to pendleton@lupus.org
By phone to 202-689-5516

Session 1: "Living with Lupus"
W. Joseph McCune, M.D.,University of Michigan Health System

Session 2: "How lupus affects us"
Tiffani Stokely; Suzanne Bante; Katherine Berry Hammons, SN

Session 3: "Empowering us!"
Katherine Berry Hammons, SN

Wishing everyone a great weekend. And to everyone walking in a Walk for Lupus Now event this weekend, and in the coming weeks ... thank you.

Lupus Now Magazine Seeks Interviewees for Upcoming Issue

The Editor of Lupus Now is seeking people to help with an upcoming issue of the magazine. We would love to interview people for the following articles.

• Integrative Medicine: If you’re combining your prescription treatments for lupus with other therapies, like yoga or meditation or qi-dong, we’d like to learn about your success.
  
• A New Prescription for Pain: Have you been managing your pain without medications? We’d love to share your secrets in this feature on drug-free ways to cope with pain.
  
• Improving the Office Visit: Have you had a bad experience at a doctor’s office -- maybe just walking in the door, maybe trying to solve a payment issue? Or are you singing the praises of your doctor and his office staff? We’re looking for your stories.
  
• Helpful Resources: If you have been assisted in obtaining disability benefits, or finding a physician in a new town, or getting medications you couldn’t afford, we want to let the rest of our readers know.

If one of these topics resonates with you, and if you think sharing your story might help others, please send your name and contact information, and a little bit about yourself, to lupusnow@lupus.org. Also, please write "Lupus Now Interview" in the subject line of your email.

Interviews are done by phone and will take place at your convenience over the next several weeks.

Thanks for your help!

LUPUS UK Member Creates Award-Winning Garden

Good morning everyone.

Hope you had a nice weekend. I was in Florida visiting family, and just returned to DC last evening. I came across this really great article, from our friends across the pond in the UK. And since I know most of us are eagerly awaiting spring's arrival, I thought it made sense to share this.

So enjoy!

LUPUS UK Member Creates Award-Winning Garden

As you may know, gardening is an important national pastime in Britain, where LUPUS UK has 29 regional groups in England, Ireland, Scotland, and Wales. So it’s no small feat that Nicki Lewis Smith, garden designer & horticulturalist from Shropshire, has received not one, but two awards for her Show Gardens, dedicated to raising awareness of lupus.

Nicki had previously been awarded the “Best Newcomer” prize for the Synchronicity Garden at the Shrewsbury Flower Show 2007, and her success continued when she took the Silver Award at the 2008 Shrewsbury Flower Show for The Lupus Garden.

On the first day of The Shrewsbury Flower Show the sun shone. It filtered through the trees, casting a dappled shade over The Lupus Garden, which was a welcoming sight. Several people commented on how they would love to sit beneath the willow arbour, don the big straw hat and relax. Even rain on the Sunday didn’t dampen people’s curiosity about lupus. The LUPUS UK leaflets flew out and Nicki, who designed, built and funded the garden, spoke to plenty of people who had never heard of the condition, as well as fellow lupus patients.

“As regards raising awareness,” said Nicki, “it was a huge success.” And the garden? “It’s been hard work, but well worth it. It’s quite sad that it will all be gone -- I’d love to transport it to somewhere quiet and have it all to myself for a bit of relaxation.”

Congratulations, Nicki and thanks from LUPUS UK for the wonderful awareness opportunity.

More photographs of “The Lupus Garden” can be seen on Nicki’s website, http://www.nickilewissmith.com/.

(Adapted with permission from News & Views, the official magazine published by LUPUS UK.)

Lupus Now Magazine Wants to Know Your Answer to the Following Question

We know summer is just around the corner, but we’re already working on the Fall issue of Lupus Now! So, just for a minute, close your eyes and think back -- or ahead -- to Halloween and Thanksgiving, Christmas and Kwanzaa and Hanukkah, winter vacations and New Year’s celebrations, and send us your answer to this "My View" question.

"What are your favorite autumn and winter family traditions?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Favorite Family Traditions" in the subject line of your email. We'll print as many of the responses as we can.

Your deadline is June 1!

Find a Walk for Lupus Now Event Near You ... Here's What's Coming in April / May 2009

Spring has sprung (as they say), and you know what that means ... it's now Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place in April 2009.

Washington, DC -- April 18, 2009
Atlanta, Georgia -- April 25, 2009
Raleigh, North Carolina -- April 19, 2009
Charleston, South Carolina -- April 26, 2009
Dallas, Texas -- April 25, 2009

Here are our Walk for Lupus Now Walks in May 2009.

Hot Springs, Arkansas -- May 16, 2009
San Diego, California -- May 9, 2009
West Hartford, Connecticut -- May 31, 2009
Vernon Hills, Illinois -- May 16, 2009
Battle Creek, Michigan -- May 9, 2009
Piscataway, New Jersey -- May 17, 2009
New York City, New York -- May 2, 2009
Charlotte, North Carolina -- May 2, 2009
Columbus, Ohio -- May 9, 2009
Oklahoma City, Oklahoma -- May 16, 2009
Houston, Texas -- May 2, 2009
Salt Lake City, Utah -- May 2, 2009
Montpelier, Vermont -- May 17, 2009

To see what other Walk for Lupus Now Walks are taking place near you, please visit http://www.lupus.org/walk.

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

Do You Want to See How / Where Lupus Affects the Body? Then Try the LFA's New Interactive Tool.

The Lupus Foundation of America has created an interactive tool
-- The Impact of Lupus on the Body -- that allows users to better understand the many ways lupus can affect the body.

The interactive tool depicts a human body, and as users scroll over each organ system, it becomes highlighted and features a text box with a brief description of how lupus can damage that particular organ or system.

Individuals will also be directed to complete the "Could You Have Lupus?" symptom checklist and answer a series of health questions based on current and past medical history. After completing the symptom checklist individuals have the option to print out a report with their answers to share with their doctor.

Try our new tool today, and learn "the impact of lupus on the body."