Guest Blog: Rallying the Public to Support Lupus Education and Research


Today's guest blog was written by Sandra C. Raymond, who is the President and Chief Executive Officer of the Lupus Foundation of America.

LupusFoundation_LA_Live-003.jpg

At the Lupus Foundation of America, the New Year is off to a busy start. Our Help Us Solve the Cruel Mystery™ National Tour is underway and we’ve reached people in cities like Washington, D.C., San Francisco, and Los Angeles who have hopped on board the 45-foot purple bus that is driving around the country on a mission to make lupus a household name.

Lupus is an autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. It affects 1.5 million Americans, mostly young women of childbearing age. But awareness about lupus is extremely low. A recent awareness survey commissioned by the Lupus Foundation of America found that more than 60 percent of Americans have either never heard of lupus or know little to nothing about it. Awareness was even lower among some minority populations who have a higher risk for lupus, like Hispanics. The survey showed that 74 percent of Hispanics had either never heard of lupus or know little to nothing about it.

All of this makes the Help Us Solve the Cruel Mystery™ National Tour critically important. The tour is a multi-city educational program and in each city the bus stops, we hold patient and continuing medical education programs (CME) for physicians. In Los Angeles, our most recent tour stop, we had people traveling in from Las Vegas to participate. One woman said her daughter had just been diagnosed with lupus and she came because she was desperate to find help. Often, people are moved to tears after going through the bus because they have been in denial or have been feeling all alone in their struggle with the disease.

In Los Angeles, a number of our celebrity supporters also added their star power to the campaign, including Tichina Arnold, who stars in the TV Land comedy Happily Divorced and whose sister has lupus, and Ian Harding, star of the ABC Family show Pretty Little Liars, whose mother has lupus.

LupusFoundation_LA_Live-050.jpg

One of our goals with this tour is to raise awareness of lupus among Members of Congress, because research on lupus is underfunded relative to its scope and devastation. On board the bus is a petition that visitors can sign to ask Congress to fund lupus research and education services. You can also go online to sign the petition at www.cruelmystery.org.

We are excited about our bus tour because this is our most comprehensive, multi-pronged effort so far to raise lupus awareness: it takes education to the people, pushes Congress for more lupus research, and rallies people to join the fight against the disease. By the time it ends, we hope more Americans and their Members of Congress will be better educated to give lupus the attention it deserves.

Comments

Hello there, I am so excited I found your site, I really found you by error, while I was researching on google for something else, Anyhow I am here now and would just like to say kudos for a fantastic post and a all round thrilling blog (I also love the theme/design for my <a href="http://www.idrivesafely.com/ "><b>Online Traffic School</b></a> Blog), I don’t have time to go through it all at the moment but I have saved it and also included your RSS feeds, so when I have time I will be back to read more, Please do keep up the awesome work on .
I am a 69 year old grandmother and have fought Lupus for many many years, and 3 cancers. Am still alive. But we have to get the word out about this horrible disease that leaves us exhausted and in so much pain that no one can really believe that you would be alive. I used to receive these "Fight Lupus" stickers that I applied to all my out going mail. I know that it made people aware of it and asking questions about it. Please make these stickers available again. So many of us Lupies would agree that we need to use them. Thank you!! Linda
Please consider coming to Monroe, Louisiana. There are no LFA support groups in our state. I am trying to raise awareness through my own support group and need help desparately to get things off the ground and get the word out to make people aware.
Please provide more Lupus awareness to the Northeast! This is such an important cause!
Thank you Lupus Foundation of America for all that you are doing with this national tour. My husband and I attended the Los Angeles seminar at the Marriott. Knowledge is power to help fight this disease!
Please come to the Staunton VA area We need the help raising awareness really bad.
Can you PLEASE come to Fresno,Ca because Lupus is NOT talked about at all.