New National Lupus Awareness Campaign Launches

Dear Friends of the LFA:

It is an exciting day! Today I represented the Lupus Foundation of America (LFA) in Washington, DC to help the Advertising Council and the U.S. Department of Health and Human Services’ (HHS) Office on Women’s Health launch a new national lupus public awareness campaign.

The LFA is Founding Partner on this campaign, which is directed toward individuals most at risk for developing the disease: young minority women of childbearing age. I hope you will take a few minutes to check it out.

I am honored to be a part of this effort to help raise awareness of a disease that has long been overshadowed and overlooked. This morning, I participated in media interviews through a satellite hookup with radio and television stations throughout the United States. LFA President and CEO Sandra Raymond and I then spoke at HHS headquarters about the urgent need to increase public awareness of lupus symptoms to improve early diagnosis and treatment of lupus.

The objectives of this new campaign are to help the public understand lupus and its health effects, and to help people at risk for lupus identify early warning signs of the disease so they can ask their doctor for a medical evaluation. The campaign includes radio and television public service announcements in both English and Spanish. Multi-language print, outdoor, transit and Internet advertisements are also included. The campaign’s website, http://couldihavelupus.gov/, features information about lupus symptoms, diagnosis and treatment, links to resources, and stories from women who are living with lupus.

The LFA and its nationwide network of nearly 300 chapters, affiliates and support groups will promote the campaign through outreach efforts to local media outlets. The LFA has expanded its online resources to include an interactive tool and symptom checklist, launched a new education series of booklets and fact sheets, and enhanced its network of health educators to meet an expected increase in the number of people seeking information and services in response to the campaign.

Through this campaign, we hope lupus will get the attention that you and I both know it needs and deserves.

xoxo,
Mercedes Yvette


National Lupus Awareness Campaign Material

Campaign Materials:
http://couldihavelupus.gov/

LFA Campaign Resources:
http://www.lupus.org/AdCouncil


About Mercedes Yvette
In 2004, as a contestant and runner-up on America’s Next Top Model, Mercedes revealed to a nationwide television audience that she has lupus. Since assuming her spokesperson role with the LFA, Mercedes has participated in national television appearances to promote awareness of lupus, and joined other lupus advocates on Capitol Hill to seek increased federal funding for research on lupus.

Watch the Latest Lupus-Related Videos on LFA's YouTube Channel

Morning everyone.

Wanted to remind you that the Lupus Foundation of America (LFA) has its own lupus channel over on YouTube.com.

I encourage everyone to head over there and check out some of the LFA's public service announcements (PSAs), as well as our videos of lupus experts talking about the latest in science and research.

Let me share one with you.

Below is a recently made video called "Target Awareness." This video provides a brief overview of lupus and its symptoms and health effects, and an overview of some of the support services available from the Lupus Foundation of America.



And one of the great things about YouTube is ... if you are moved or inspired by a particular video, you can embed the HTML code on your own blog, or website. The more people who see these videos and understand the seriousness of lupus, the more the public's level of awareness is raised, which will translate into more funding for lupus-related research.

So feel free to bookmark the LFA's channel in YouTube, or better yet, subscribe to that page. I'll be featuring other videos in the coming weeks.

Until next time, Wick

Lupus Foundation of America is "Walking" into the Twin Cities

Join the Lupus Foundation of American as it launches its inaugural Walk for Lupus Now event in Minneapolis, Minnesota on Sunday, June 21, 2009. As you know, it is estimated that 1.5 million Americans have a form of lupus, and 14,250 of them live in the Twin Cities metropolitan area.

Come together with other families touched by lupus for a fun, inspiring and hope-filled morning at Lake Calhoun.

To register as an individual, or as part of a team, go to Twin Cities Walk For Lupus Now.

Here are some of the details for the Twin Cities Walk.

Sunday, June 21, 2009
Lake Calhoun
3000 Calhoun Pkwy
Minneapolis, MN
Check in 9 a.m.; Walk begins 10 a.m.

Walk for Lupus Now is the national signature event of the Lupus Foundation of America. In 2009, volunteers will be walking in 50 cities across America in order to raise awareness about lupus, and raise much needed funds to support LFA programs in advocacy, research, and education.

To find an LFA Walk for Lupus Now event near you, visit www.lupus.org/walk or call 202-689-5516.

Spring 2009 Issue of Lupus Now Magazine ... Coming to A Mailbox Near You!

The first issue of Lupus Now 2009 has information in store on many important topics for people with lupus, including Vitamin D -- why you need it and how to get it; heart-healthy guidelines; and five new books recommended by the LFA education Committee that you’ll want to check out.

You’ve heard us talk a lot lately about the first-ever national Ad Council campaign designed to raise public awareness about lupus. In conjunction with the awareness campaign’s launch this spring, the first feature, “The Butterfly Effect,” examines the importance of early diagnosis and treatment, and follows three young women as their lives change forever.

We all know how difficult it can be to explain lupus to friends and family. So, the second feature, “But You Don’t Look Sick!” -- and who hasn’t heard those words one too many times? -- is about helping others understand the effects of medications, the inevitable mood swings, and the feeling of missing your former “self.” Lupus is so much more than a list of symptoms, isn’t it?

And those pretty ladies on the cover? They are muralist and children’s book writer/illustrator Adjoa Burrowes and her teenage daughter, Hyacinth and another teen, Chelsea. In the Teen Talk column they talk about growing up with a mom who has lupus. Are they worried about having lupus themselves? What about going away to college? And how did their moms ever find the words to explain lupus?

The Wellness section reveals conversations we have had with people about how they cope with anxiety, which is very bad for lupus! We also hear from women and men about how they show appreciation for that special person who is there for them every day, no matter what. And nothing is more important than that.

As always, you can check out the online version of Lupus Now magazine.

Better yet ... why not get a subscription to this award-winning magazine? To do so, simply follow this link.

Guest Blogger Shares Her 2009 Lupus Foundation of America Advocacy Day Experience

"While it’s not always easy to take time out of our busy lives, the Lupus Advocacy Day in March of 2009 was well worth all of the sacrifice. It was wonderful to feel the support and comfort of those who share my passion toward finding a cure for lupus. As lupus patients we often suffer in silence and try to hide our disease. Stepping out of our comfort box and speaking up for our cause was very empowering. Doing so with my fellow lupus sufferers made me realize that I am not alone in my struggle.

"My day’s experience included the opportunity to speak with the staff members of my district’s house member and senators. The response from them was very positive and they gave me assurance that they will speak to the issue of support from my district’s representative and senate. At the end of the day for my scheduled appointments I got on the elevator to leave the building. One other person got on the elevator with me ... a representative from a neighboring district in my state. I asked him if we could walk so that I discuss with him his support for lupus research.

"What a great experience it is to put legs to your passion!"

Katherine Hammons

Photo: Katherine Hammons, Lupus Advocate from Michigan, Lupus Foundation of America

Guest Blogger Shares His 2009 Lupus Foundation of America Advocacy Day Experience

"I feel the Lupus Foundation of America's Advocacy Day 2009 was the best ever. This was the result of many factors. The training we received prepared us for answering any questions that might be asked of us by members of Congress, or their legislative assistants.

"The different speakers, including Dr. Susan Manzi from the Lupus Center of Excellence in Pittsburgh, and Sandra C. Raymond, President & CEO of the Lupus Foundation of America in Washington DC, did an outstanding job of not only motivating us, but also explaining what our priorities were, and why we need additional funding.

"Each member of our group had a role to play that brought everything together. I really feel that all the training enabled us to be effective advocates. The many legislative assistants we spoke to seemed very positive and understanding. All in all, it was a tremendous experience.

"I want to thank everyone who put this fantastic program together. Last but not least, I want to thank members of the Lupus Foundation of America, Illinois Chapter. I really enjoyed working with Mary Dollear, Paul Sakol, and Sonya Loynachan."

Photo: Bruce Soehnlin, Lupus Advocate, Lupus Foundation of America, Missouri Chapter

Facebook, Twitter, Bloggers, and Advocates on Capitol Hill Create the Largest Lupus Advocacy Day in History

1300 Advocates Make Their Voices Heard

The real and virtual worlds came together on March 3, making the Eleventh Annual Advocacy Day the largest and most successful in history. We used social media and the Internet to spread the word and encourage people to get involved. E-cards were sent to our constituents with suggestions on how they could help, and we asked them to send their own e-cards to friends and family. We asked people to change their Facebook status, post information on their blogs, and use Twitter to keep everyone updated on Advocacy Day activities. A sea of advocates covered in purple also descended on Capitol Hill delivering the same message to Members of Congress -- federal funding for lupus research must be increased.

Lupus advocates drove long hours, endured bad weather, and overcame personal challenges to join us on Capitol Hill. Advocates prepared for their visits by participating in a day-long training that was kicked-off with the theme music from the movie Rocky, and the distribution of purple (the signature color for lupus) scarves. The Rocky theme music was used to inspire and motivate the advocates, while demonstrating the tenacity and fighting spirit of people with lupus. During the training advocates celebrated past successes, learned how federal funding is being used to advance lupus research, and discussed how to talk to Congressional Members and staff about our legislative agenda.

On Advocacy Day advocates wore their purple scarves. To reinforce the message of the day, they also wore stickers with the message "Eisenhower was president the last time the FDA approved a drug for lupus." Most people were surprised to learn that it has been 50 years without a new, FDA-approved lupus drug.

Senator Barbara Mikulski (D-MD) delivered a speech during the Advocacy Day luncheon that energized the advocates and brought the crowd to their feet. She reminded everyone how important advocacy is, and that we have great hope and potential for change. Senator Mikulski has always been a health care champion and patient advocate, and the LFA was pleased to present her with the Distinguished Leadership Award for her work on the Lifespan Respite Care Act, and past support of the Lupus REACH Amendments.

Advocates were successful in forming new relationships with Members of Congress and staff, and more importantly creating new champions for people with lupus on Capitol Hill. During many of the visits Members of Congress or their staff also found new connections to lupus. One advocate learned that a staff member attended high school with her daughter who has lupus. This is just one of many stories, and is a powerful reminder of how lupus touches everyone, and that it reaches beyond just the person living with the disease. We are thrilled with the results the lupus advocates achieved and thank everyone for their participation in Advocacy Day activities.

In the coming days and weeks we will be posting photos from our advocates on Flickr, and a video documenting their experience on Capitol Hill will be posted on our website and YouTube.

We have made our voices heard loud and clear on Capitol Hill -- and will continue to do so. With your ongoing support we believe we can achieve our goals and get the funding for lupus research we need that will lead to new treatments, and ultimately a cure.

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

Spring is just around the corner, 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
• Dallas, Texas -- April 25, 2009

Some Walk for Lupus Now Walks in May 2009 include:

• San Diego, California -- May 9, 2009
• Vernon Hills, Illinois -- May 16, 2009
• New York City, New York -- May 2, 2009
• Charlotte, North Carolina -- May 2, 2009
• Houston, Texas -- May 2, 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.

LFA's "Kidney Involvement & Lupus" Webchat to be Held Wednesday, March 11 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, March 11, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Brad Rovin, FACP, FASN, who will serve as the guest expert for the Kidney Involvement & Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Rovin is the Director of the Division of Nephrology, and is also the Director of the Fellowship Program in Nephrology at Ohio State. Dr. Rovin has been at Ohio State University for 19 years, and has been recognized by Best Doctors® for his work in the area of glomerular diseases.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

“Call-In to Congress” on Tuesday, March 3, and Make Your Voice Heard – More Money is Needed for Lupus Research.

Fifty years is too long to wait for safer, more tolerable and effective FDA-approved lupus treatments. Help the estimated 1.5 million Americans living with lupus by being a part of the "Call-In to Congress" component of the Lupus Foundation of America’s 11th Annual Advocacy Day on March 3, 2009.

Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and click on the link called "Call your Members of Congress Tuesday, March 3rd!" Then, you’ll enter your zip code and get the phone numbers for your elected officials.

The other thing you will notice after you’ve entered your zip code, is that you will also see a guide of Talking Points for when you speak with Congressional Staff. Use these talking points to tell them how having lupus or knowing someone with lupus has affected your life.

The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.

Together, we can change the future of those affected by lupus.

Here's One Way You Can Raise Awareness about Lupus; Send an eCard

Hi everyone:

And welcome to the special Sunday night, pre-Advocacy Day on Capitol Hill edition of "On the Road to a Cure."

As you no doubt have heard, this coming Tuesday, March 3, 2009, is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus. I'd like to highlight one way.

Send an eCard

Raise awareness about lupus and the need for new treatments by sending your friends and family an eCard. There are 3 cards to choose from: Eisenhower, nostalgic cars, and traffic jam. You can see an example of the Eisenhower eCard in this column.

Fifty years is entirely too long to wait for better, safer, and more tolerable treatments.

Help the Lupus Foundation of America raise awareness about the seriousness of lupus. Send an eCard to your family, friends, and coworkers today.

I'll be back again tomorrow night, to share with you how to contact your senators and representative on Tuesday, March 3. It's simple to do, and you can do it from the comfort of your home.

Until tomorrow night,
Wick