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

"Zero in 50 ... What?!"

In the January 2009 Lupus Living enewsletter, we challenged you to share with us your ideas for trying to raise awareness about lupus, as part of the "Zero in 50" campaign.

The LFA received an impassioned video from "the LEEP Chat Channel," a young woman who is living with lupus. After reading that there had been no new drugs in 50 years, she was compelled to respond, and take action. Watch her video.



What a great video!

So that got us thinking. Are there any other budding filmmakers / videographers out there? If so, we'd love to hear from you. Send us links to your video clips, and/or email your thoughts to us at 50years@lupus.org.

You can also join the discussion on our message boards and give us your suggestions.

Zero in 50: The LFA's New Video

November 20, 2008 marked the fiftieth anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus.

In this brand-new video, Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.

50 Years Without a New Lupus Drug

The Lupus Foundation of America (LFA) brings increased attention to the need for safer, tolerable and effective lupus treatments through its Zero in 50 campaign. Thursday, November 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus.

Today, there is great cause for optimism. There are more lupus researchers and pioneers in biotech and pharmaceutical companies than ever before working to develop new treatment for lupus. We believe through continued partnerships on all fronts we can accelerate the pace of discovery and ultimately end the suffering caused by lupus. The LFA is on the front lines of this effort to advance the science and medicine of lupus and to bring down barriers that have impeded progress in lupus research.

Read more about this new campaign, read stories from people living with lupus and what 50 years without a new lupus drug means to them, and learn how you can take action.

Lupus Blog Spotlight: Lupus Ranting

Good morning everyone:

Sorry all was silent last week. I was out of town on business travel and was unable to post anything.

I have a lupus blog I'd like to share with you. It is called Lupus Ranting. It's written by a woman -- Sue -- who lives in Missouri.

Here's a little bit about Sue ... in her own words.

"I was diagnosed with systemic lupus (SLE) in 1992. I also have subacute cutaneous lupus (SCLE). Autoimmune disorders are frustrating and vexing. If you have one (or more) you understand what it’s like. If you don’t and decide to read this blog on a regular basis, you’ll eventually learn something. I’m not sure exactly what but hey, this is a blog after all.

I consider myself lucky. I have a full-time job, health insurance, an understanding employer, supportive family and friends, an amazing son. I created this blog to write about life, friends, family, lupus and an array of stuff."

If you have some time, swing by Lupus Ranting and say hi to Sue.

What does 50 years without a new lupus drug mean to you?

The LFA is still looking for your thoughts on what 50 years without a new lupus drug means to you. To learn more about this campaign, and to take part in it, visit Zero in 50.

That's your lupus scoop for today.

Until next time, Wick

50 Years Without a New Lupus Drug! What Does it Mean to You?

Share your stories with Congress and Encourage Researchers to Keep Up Their Effort

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to 50years@lupus.org as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!

1. Deliver your message to Congress. During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policy makers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.
   
2. Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact of 50 years with no new drug has on people with lupus and their families.
   
3. Share your "Thank You" notes with Researchers and Industry Executives. Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and to conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.