Lupus Foundation of America Launches “Official” Fanpage in Facebook

Great news … the LFA has launched its official Facebook fanpage. Become a fan today!

What You Get by Becoming a Fan

Access to lots of great information, plus the opportunity to directly connect with others who are also living with this disease.

What You’ll Find in the LFA Fanpage

Interact with others living with lupus by posting to the LFA wall. Have a question? Post it. Got an answer to someone else’s question? Then post it. Plus, you can keep up-to-date on the latest lupus information by signing up to receive LFA’s enewsletters.

Check out all of the LFA’s campaigns, including the new LUCY awareness campaign. In the LUCY & Lennon section, you’ll find extra goodies not available on lupus.org, like the LUCY photo album.

Keep abreast of the LFA’s events, whether it’s Advocacy Day on Capitol Hill in March, or the spring 2010 season of Walk for Lupus Now. Watch the latest research videos. And there’s much more!

Don’t wait a minute longer! Share with your family, friends, and coworkers.

Become a fan of the Lupus Foundation of America today.

See what others are already saying …

Thanks LFA for all the work you all do!! Much appreciated by a fellow Lupie.
Cindy

For those of us with lupus, you are a ray of hope and information. Thank you.
Lois

I have always been a fan of the Lupus Foundation of America.
Jo Anne

Give Your Skin Relief from the Winter Weather

Whether you spend the winter hibernating inside or braving the chill of the great outdoors, chances are your skin is suffering during the coldest months of the year. For people with lupus who may already be dealing with photosensitivity, skin rashes or lesions, and side effects from medication, winter's freezing temperatures, low humidity, and wind exposure just make things worse. It's no surprise that people find themselves battling dry, cracked skin and "winter itch."

Learn how to best protect your skin.

Taken from the Fall 2008 issue of Lupus Now magazine.

Guest Blogger Amanda Davenport Dishes on LUCY and Lennon

Hey everyone, it’s me again … Amanda. I wanted to share with all of you a great experience I recently had.

This past Tuesday, December 15th, I had the privilege of going to the CBS Early Show with a few of the Lupus Foundation of America (LFA) ladies -- my new friends Maggie and Sara -- to meet Julian Lennon and James Scott Cook. We were there to show support for their new single "LUCY" which will help raise awareness and money for lupus.

What a great time we had! It was so nice to finally meet Maggie and Sara, and they are absolutely awesome. We are so fortunate to have them working with us to give lupus the proper attention it deserves. I know I am thankful.

Despite the very cold temperature, it was nice to feel the warmth of a crowd gathered together for a common cause. The fact that we got to meet Julian Lennon and James Scott Cook made it a day I will never forget.

If you do not know the backstory of the song "LUCY," I encourage you to visit lupus.org/Lucy. Here's a little hint. Julian Lennon's "LUCY" is the same "LUCY" from a certain Beatles' song written by his father, John. The fact that James Scott Cook's grandmother also has lupus -- and is also named Lucy -- made the song that much more poignant.

Meeting Julian and finding out just how truly nice a guy he is, coupled with the fact that he is very passionate about helping those of us affected by lupus, inspired me and those I was with to try to do even more.

Thanks to all of you who keep up the fight, and to Maggie and Sara for coming to NYC for this amazing event. And a very special thank you to Julian Lennon and James Scott Cook for creating such a lovely song that carries a message of hope for all of us.

I am very proud to say that I was there that day.

If you'd like to see more pictures from that day, please become a fan of the LFA in Facebook.

I wish everyone happy holidays! Keep Fighting!

Amanda

photos courtesy of Amanda Davenport
Top right photo: Julian Lennon poses with Amanda Davenport
Bottom right photo: James Scott Cook signs Amanda's Walk for Lupus Now t-shirt

The Story behind LUCY

As you have no doubt heard, musicians James Scott Cook and Julian Lennon have partnered to release the song, LUCY. A portion of the proceeds will be donated to the Lupus Foundation of America and the Saint Thomas' Lupus Trust in Great Britain to support lupus research.

In this video, Julian explains the associations between his childhood friend, one of his father's most famous songs, and the autoimmune disease lupus. Then he and James perform an acoustic version of the song, LUCY.

Download LUCY from iTunes and Support Finding a Cure for Lupus

Musicians James Scott Cook and Julian Lennon are doing their part in the search for a cure for Lupus. For both men – this is personal. James’ 92-year-old grandmother, Lucy Cook, has lived with lupus for many years, and Julian’s childhood friend, Lucy Vodden, recently passed away at the age of 46 after a long battle with the disease.

You may already have heard the story that one day four-year old Julian brought home a watercolor painting of his friend and classmate, Lucy Vodden. Julian told his dad that the drawing was “Lucy in the Sky with Diamonds” which inspired his father, the legendary John Lennon, to write one of his most famous songs of the same name.

To honor both of these women James and Julian have partnered to release the song, “LUCY.” A portion of the proceeds will be donated equally to the Lupus Foundation of America and the St. Thomas Lupus Trust in Great Britain to support lupus research.

Download LUCY Today!

From now until March 15, 2010, 100 percent of the proceeds from each download of the “LUCY” from iTunes will be donated to lupus research. Don't have iTunes on your computer? Download the software here.

Let’s keep the momentum going!

Help us spread the word and invite others to support raising awareness of and funds for lupus research. By taking just a few minutes you can honor someone in your life who lives with lupus, just like James and Julian are doing.

Send an e-card (up to 10 per day) to your friends and family, and ask them to join you and “band together” to support lupus research by downloading “LUCY” from iTunes.

Learn More

Learn more about the story behind LUCY on the LFA website.

LFA Advocates Successfully Increase Lupus CDC Funding

Your Voices Were Heard!

Thanks to you, Congress has heard how important lupus funding is to their constituents! On Sunday, December 13, 2009, Congress passed the Omnibus Appropriations bill for Fiscal Year 2010. In this bill there is:

• $4,505,000 for the National Lupus Patient Registry (NLPR) at the Centers for Disease Control and Prevention (CDC). This is an increase of $505,000 over FY09 Appropriations.
  
• $1 million to continue the national lupus health education program for physicians and healthcare providers within the Office of Minority Health.

The National Lupus Patient Registry is the most comprehensive epidemiological study on lupus to date which will determine the true national incidence and prevalence of lupus among all populations, as well as uncovering the burden of the disease on individuals, families and society. To date, the NLPR program has received $12.1 million which has been used to create four study sites in California, Georgia, Michigan, New York, and the Indian Health Service.

This bill will now be sent to the President for his signature. On behalf of the Lupus Foundation of America and people with lupus, thank you for making your voices heard!

If you are interested in making your voice heard in person for Fiscal Year 2011 lupus priorities, please join with us on Capitol Hill March 15-16, 2010 for the Lupus Foundation of America’s Advocacy Day! The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with the offices of their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that have an impact on people with lupus. Registration will open in January 2010.

Come to the Lupus Foundation of America’s 2010 Advocacy Day March 15-16!

Join with the Lupus Foundation of America (LFA), people with lupus and their friends and family for the LFA’s 2010 Advocacy Day. The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that impact people with lupus.

The LFA’s 2010 Advocacy Day Program will begin on March 15th with a training session and dinner at the L'Enfant Plaza Hotel to meet other people who have been touched by lupus and discuss the LFA’s Advocacy Message.

On March 16th, we will travel to Capitol Hill to meet with Members of Congress and inform them about our legislative priorities and share our personal stories about lupus.

Registration opens January 2010.

Until then, learn more about the LFA's advocacy efforts.