Even If You Cannot be in DC for LFA’s Advocacy Day, Here’s What You Can Do from the Comfort of Your Home

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.

• Call your Representative and Senators and tell them to provide more funding for lupus research. To find your Senators and Representative, go to http://www.capwiz.com/lfa and click on the link "Call your Members of Congress Tuesday, March 3rd!" Then you will enter your zip code, and get the contact info for your senators and representative.
  
• Send an e-card. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.
  
• Donate. With your donation we can continue to fund cutting-edge lupus research. Go here to make a donation.

Facebook
There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.

"YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa"

Twitter
If you have a Twitter account and are joining us for Advocacy Day, you can "tweet" your Advocacy Day experience. You might want to post updates such as "Heading to Capitol Hill now" or "Meeting with Senator Young."

If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested "tweets."

"Support LFA’s Advocacy Day tomorrow. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

"Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

Lupus Blog Spotlight: Manic Mom

I would like to share a lupus blog with you. It is called Manic Mom. It's written by a woman in California, who is living with lupus.

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

"I'm a mom to 3 awesome kids -- a 14 year old, a 9 year old, and a 2 year old. I've been fighting lupus for 5 years now & I pray daily for pain-free days. Between home schooling & working on my memoir, I run around the house screaming & controlling the world. Well, maybe on a small scale this is true, but I do yell a ton. I've been told that I laugh worse then Roseanne & that I cook better then Paula Dean. My house is a mess no matter how hard I try to fight the clutter monster. Mr. Clean & the freshness of the whole darn Pine Sol forest have let me down time & time again. I tell my hubby to live with it or do it yourself."

If you have some time, swing by Manic Mom and say hi to her.

That's the lupus scoop from my end.

Until next time, Wick

Visit the Lupus Foundation of America's Lupus Channel on YouTube, and Watch the Latest PSAs and Research Videos

Morning everyone.

Wanted to share a great resource with you. 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 "Biomarkers for Heart Disease in African American Women with Lupus." In it, Dr. James C. Oates, Associate Professor of Medicine at the Medical University of South Carolina, discusses his LFA-supported research study on Biomarkers of Reactive Nitrogen and Oxygen Stress as Risk Factors for Cardiovascular Disease in African Americans with Lupus.

Cardiovascular disease has become one of the leading causes of disability and mortality among people with lupus. The LFA is leading efforts to address study this serious complication of lupus and find ways to treat or prevent CVD in people with lupus.



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.

Wishing you all a wonderful weekend.

Until next time, Wick

Stimulus Bill Includes NIH Funding for Research; LFA Advocates to Bring Focus on Lupus

Yesterday, President Obama signed into law the American Recovery and Reinvestment Act of 2009. With the leadership of Senator Arlen Specter and Senator Tom Harkin, Congress secured a significant funding increase of $10.4 billion for the National Institutes of Health (NIH). Among other provisions this bill will provide much-needed funding to support research leading to scientific and medical breakthroughs, and ultimately new treatments. This is a victory for the medical and scientific community who are working tirelessly to develop new treatments for people with lupus and other diseases.

Government funding for lupus research is more important than ever before. November 20, 2008, marked 50 years since the Food and Drug Administration (FDA) last approved a new drug specifically to treat lupus. Compared to other diseases, lupus is unique, both in its lack of FDA-approved treatments, and in the dearth of research endeavors to identify better treatments, and, ultimately, a cure.

On March 2-3 an estimated 300 individuals with lupus, their families, and health professionals will deliver this message to Members of the United States Congress, and serve as the voices of the estimated 1.5 million people who have lupus, when the Lupus Foundation of America (LFA) conducts its Eleventh Annual Advocacy Day in Washington, D.C. LFA advocates have achieved numerous successes in recent years, including a call for a national public awareness campaign, funding for studies that determine the true prevalence of lupus in the U.S. and opening new sources of federal agency funding for biomedical research.

The past success of our advocates and the new legislation demonstrate the critical importance of advocacy efforts and why people with lupus must be heard by their elected officials and encouraged to support policy that expands research funding, increases access, and improves the quality of care. We hope that you will join us and that we can continue to count on your support in the fight against lupus.

On behalf of all people affected by lupus, the Lupus Foundation of America thanks President Obama and Congress for supporting NIH research and helping us move closer to finding better treatments and a cure for this disabling and life-threatening disease.

Sincerely,
Sandra C. Raymond
President and CEO

Join us in the fight against lupus -- sign up to become an e-advocate today!

Women’s College Basketball Teams Show They’re Passionate about Helping Those With Lupus

In October 2008, the Lupus Foundation of America (LFA) was contacted by Simmons College Head Women's Basketball Coach Tony Price who wanted to do something to support those affected by lupus. He has a personal connection to lupus, and as a coach at an all women’s college, he feels the need to help support and raise awareness of a disease that is often overshadowed.

Through Coach Price’s leadership and vision, the first-ever "Passionate Purple" week was created -- a week in January where women's basketball teams and game programs were dedicated to raising awareness about lupus and collecting funds to be donated to the LFA. During the week, the players, coaches, and fans were encouraged to wear purple -- the signature color of lupus.

Another member of the Great Northeast Athletic Conference (GNAC) family, Mount Ida Head Women's Basketball Coach Jack Casey has also felt the effects of lupus. Coach Casey's wife Annemarie has lived with lupus for 28 years. As an active member of the lupus community, she used the Mt. Ida game as another opportunity to share her story about what it’s like to live with lupus, and why every dollar and every person reached matters.

We are thankful for the leadership of Coach Price and the support of the GNAC schools, and its players, coaches, students, faculty, and fans who helped raise money that will support LFA’s programs. We think it’s great that we get contacted by organizations and individuals like the GNAC and Coach Price who want to partner or do an awareness event, whether it’s on a small or large scale, and hope people continue to follow their lead.

Thanks Coach Price and GNAC!!!

Photo: Coach Tony Price, Annemarie Casey, and Coach Jack Casey

Lots of Ways to Stay Informed with the Lupus Foundation of America

Good morning everyone:

Wanted to share a few things with you.

First, thanks to everyone who attended the "Cardiovascular Health & Lupus" webchat hosted by Dr. Amy H. Kao on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

We hope you will join us for the March 11, 2009 webchat. The topic is "Kidney Involvement & Lupus," and it's hosted by Dr. Brad Rovin. Mark your calendars for that.

Also wanted to let you know you can now follow the Lupus Foundation of America in 2 new ways.

LFA on delicious
Join the LFA on delicious, one of the web's largest social bookmarking websites.
http://delicious.com/LupusFoundation

Twitter.com
You can now follow the Lupus Foundation of America on Twitter.com/LupusOrg.

That's your lupus scoop for the day. Have a great Presidents' Day weekend.

Until next time,
Wick

"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.

Seeking Men with Lupus to be Interviewed for a Lupus Now Magazine Article

Good morning everyone:

Wanted to pass along a request from my coworker Jenny Allan, the editor of Lupus Now magazine.

Seeking Men with Lupus for Lupus Now article

The editor of Lupus Now, the LFA’s national magazine, is working on a story on Inspirational Role Models -- interviews with people who began a new business or career direction due to lupus.

If you are a man with lupus who can speak on this topic, or if you know a man with lupus who fits this profile, we would like to hear from you. Send an email to lupusnow@lupus.org. Please put “New Career” in the subject line.

On behalf of Jenny, I wanted to say thanks in advance to everyone for helping us out. Have a great Tuesday.

Until next time, Wick

Save a Heart with Lupus. Send an eCard this Valentine’s Day.

It’s Heart Health Month, so warm a heart this Valentine’s Day and make a donation to support the Lupus Foundation of America by sending an eCard to someone you care about.

With your donation we can continue fund critical cardiovascular research and education programs that will help protect the hearts of those with lupus.

Give hope to the hearts of those with lupus by sending your donation eCard today.

LFA's "Cardiovascular Health and Lupus" Webchat to be Held Wednesday, February 11 at 3 p.m. Eastern

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

The LFA welcomes Dr. Amy H. Kao, who will serve as the guest expert for the Cardiovascular Health and Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Kao is currently assistant professor of medicine at the University of Pittsburgh and rheumatologist with the Lupus Center of Excellence at the University of Pittsburgh Schools of the Health Sciences and University of Pittsburgh Medical Center (UPMC).

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.

Hotel Registration Deadline for Advocacy Day 2009 Extended To Friday, February 13

Update: The hotel registration deadline for the LFA's 2009 Advocacy Day on Capitol Hill has been extended to Friday, February 13th.

Join the LFA on Capitol Hill for Advocacy Day >>

Seeking College Students With Autoimmune Diseases to Participate in a Survey

Update: We have just learned that the study is now full. We appreciate your interest and will let you know if other studies become available.


If you are a college student diagnosed with a(n) autoimmune related disease(s), then you may be eligible to participate in the Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases study. It's an anonymous online questionnaire (created by researchers at Indiana University Bloomington) asking about your health related academic problems, needs, perceptions, and experiences of living with an autoimmune related disease while attending college.

More than 100 autoimmune related diseases (i.e. lupus, ulcerative colitis, type 1 diabetes, multiple sclerosis, fibromyalgia, juvenile/rheumatoid arthritis, etc.) affect more than 23 million Americans. No data is available on the incidence, prevalence or needs of college students diagnosed with autoimmune related diseases.

To participate in the study, you must be:

• 18 or older
• currently enrolled full time or part time in a 4-year institute of higher education, and
• diagnosed with one or more autoimmune related diseases by your health care provider.

Optional entry to win one of 10 $25 gift cards (5 from Target and 5 from Wal-Mart).