Two Teens with Lupus Win Spots in the Rose Parade with Kaiser Permanente

The Lupus Foundation of America applauds their efforts to raise awareness of lupus in children.

Two southern California teens living with lupus will be among the riders aboard the Kaiser Permanente float in the 120th Annual Tournament of Roses Parade on January 1, 2009. Nathalie Gonzales and Jessica Southern will appear on the float with 12 other riders, ages 12 through 18, who are battling life-threatening diseases, including lupus, cancer, and sickle-cell anemia. Kaiser Permanente Health Plan physicians nominated the teens based on their positive attitudes and persevering spirits.

With the theme, "Propel Your Dreams," the float design centers on Kaiser's ongoing health message, "Thrive." The float is a colorful and imaginative flying vehicle powered by inspiring children who cycle, row, and jog above floral clouds of solid roses.

"We are excited that these girls have been chosen to have this once in a lifetime experience," said Sandra C. Raymond, LFA President and CEO. "We appreciate the efforts of Kaiser Permanente, Nathalie, Jessica, and their parents to raise awareness of lupus in children."

Although not as common in children as it is in adults, lupus in children may develop early and tends to be more severe with multi-organ system involvement. While there have been no drugs approved by the U.S. Food and Drug Administration specifically for lupus in 50 years, research and advances in the science of lupus has improved the future for children and teens affected by lupus. There is hope on the horizon that young teens, like Nathalie and Jessica, won't have to suffer and wait another 50 years for new treatments. Today, there are more lupus treatments in development than ever before.

The Lupus Foundation of America (LFA) is on the front lines of the effort to advance the science and medicine of lupus and to bring down barriers that have impeded progress in lupus research. The LFA has established the Michael Jon Barlin Pediatric Lupus Research Program to enhance key understanding of research issues specific to lupus in children and identify novel, innovative basic/translational/clinical pilot projects. Earlier this year, the LFA launched its new Center for Clinical Trials Education (CCTE) through its website as a resource for people interested in learning about and joining lupus clinical trials.

On January 1st, turn on your TV and look for Nathalie Gonzales and Jessica Southern on Kaiser Permanente’s Rose Parade float!

In the following weeks, Nathalie and Jessica’s experience in the Rose Parade will be featured on the LFA website, http://www.lupus.org/. They will be documenting their experience on the float with video and pictures that will be posted on the LFA website, and here in our blog.

Read more about lupus and children, teens, and young adults.


Photos: Nathalie Gonzales (top right); Jessica Southern (lower left)

"What is Lupus" Makes Google Top 10 List for 2008

For the second year in a row, "What is lupus?" has made Google's Top 10 list for "what is" searches on Google.com. Here is the list in its entirety.

What is...

1. what is love
2. what is life
3. what is java
4. what is sap
5. what is rss
6. what is scientology
7. what is autism
8. what is lupus
9. what is 3g
10. what is art

Source: Google Zeitgeist 2008

Use the LFA's new eCards to Send a Message of Hope

Dear Friends:

As you honor your loved ones this holiday season, consider sending a meaningful gift of hope. Select from three beautiful eCards, designed by individuals who have a connection to lupus, and make a gift to LFA in honor of your loved ones and friends.

Send Your eCard today!

Your special message will be included on your eCard, and you will receive a receipt for your tax-deductible gift.

What a special way to honor friends and loved ones during the holidays. As always, thank you for your continued support of our mission to find the causes and cures for lupus, and to provide life-enhancing services and support to all people affected by this disease. I wish you and yours peace, health and happiness in 2009.

With warm wishes,







Sandra C. Raymond
President & CEO
Lupus Foundation of America

2009 Lupus Webchat Schedule Posted on LFA Website

Morning all.

The 2009 schedule of lupus-related Webchats has been posted to the lupus.org website. Dates and guest speakers are still being finalized, but the topics have been confirmed. And here they are ...

• January 2009 -- Newly Diagnosed / Living with Lupus
• February 2009 -- Cardiovascular Involvement and Lupus
• March 2009 -- Kidney Involvement and Lupus
• April 2009 -- Lupus and your Eyes (30 min) / Dental issues and Lupus (30 min)
• May 2009 -- Neurology/CNS and Lupus
• June 2009 -- Men and Lupus
• July 2009 -- Lupus and Your Skin
• August 2009 -- Lupus Issues for African Americans
• September 2009 -- Participating in Clinical Trials
• October 2009 -- Work Disability / SSDI / Health Insurance
• November 2009 -- Social Wellness, Making Connections and Helping Others Understand What you go through with Lupus
• December 2009 -- Medications

Mark your calendars now. And hope to see you at a Webchat.

Until next time, Wick

2009 College Scholarships for Students with Parents with Disabilities

This came across my desk and I wanted to share it with you.

2009 College Scholarships for Students with Parents with Disabilities

Through the Looking Glass and its National Center for Parents with Disabilities and their Families are pleased to announce new scholarships specifically for high school seniors and college students who have parents with disabilities. These scholarships are part of Through the Looking Glass’ new federal grant (New National Center for Parents with Disabilities and their Families). Please note that these are new awards and have different application procedures than in the past. There are two separate scholarship awards, and each has separate eligibility requirements:

1. High School Seniors. To be eligible, a student must be a high school graduate (or graduating senior) by Summer 2009, planning to attend college in Fall 2009 and have at least one parent with a disability. Five separate $1000 awards will be given out in Fall 2009. Individuals may submit only one application per award period.
   
2. College Students. To be eligible, a student must be currently enrolled in a college or university, be 21 years of age or younger as of March 16, 2009, and have at least one parent with a disability. Five separate $1000 awards will be given out in Fall 2009. Individuals may submit only one application per award period.

All application materials must be completed and postmarked by Monday March 16, 2009.

Selection criteria for all scholarships include academic performance, community activities and service, letters of recommendation and an essay describing the experience of growing up with a parent with a disability.

These Scholarships are also part of a research study on young adult children of parents with disabilities. As explained in the Consent Form in the Application, you may be willing to participate in an optional survey about young adult children of parents with disabilities. The additional information you submit on this survey will not affect your scholarship chances and will not be disclosed to anyone outside the project researchers; all identifying information will be removed. If you consent to participate in this optional survey, we will email you the survey after we have received your completed application.

To learn more, please visit the National Center for Parents with Disabilities and their Families website.

Looking for Last Minute Gift Ideas for the Holidays? Check out LFA's Online Store.

Shop the Lupus Shop's Clearance Aisle for Great Holiday Bargains

If you shop now, you can save 50% on cell phone charms, purple ribbon magnets and the "On a Seasonal Note" holiday CD.

Shop our clearance aisle today.


Give a Gift Subscription to Lupus Now Magazine

Celebrating its 5th anniversary, Lupus Now magazine makes a great gift for loved ones who are living with lupus.

And if you act now, you can subscribe to Lupus Now for 2 years for only $30 -- that's a 40% savings! Follow the link below, and select "2 year (domestic) - 30.00" from the drop-down menu.

Give a gift subscription to Lupus Now.

(new domestic subscriptions only)

Give A Lupus Gift of Hope This Holiday Season

I am reaching out to you in this busy season to say thank you for your support of the Lupus Foundation of America (LFA). Your trust and investment in LFA has enabled us to fund more promising research, to educate more health professionals, and to provide life-enhancing services to thousands of families affected by 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 treatments 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.

Because of support by dedicated partners and contributors, we have given hope to so many lupus patients, friends and families by launching the Center for Clinical Trials Education, a comprehensive clearinghouse of information to educate people about participating in lupus clinical trials; tripling funding for the Centers for Disease Control and Prevention (CDC) to fund the first-ever comprehensive study to determine how many people have lupus in the U.S.; awarding new grants to 19 leading lupus researchers at major U.S. medical centers; and conferring first-time awards for new lupus research, including male and pediatric research.

No gift is more meaningful than the gift of hope. I ask that you consider making a gift that will help find better treatments and a cure for lupus. Your most generous tax-deductible gift now will help sustain the LFA’s programs in research and education, life-saving work that we must not hold back, even in these trying times.

In this holiday season, your gift will light the way for the millions of women, men and children living with lupus. We join together to wish you, and those dear to you, health, peace and joy.

Thank you for caring and for your generosity.

Sincerely,





Sandra C. Raymond
President and CEO

Lupus Foundation of America's "Depression & Lupus" Chat Transcript Posted Online

Thanks to everyone who attended the "Depression & Lupus" webchat hosted by Dr. Al Herzog on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

And, we hope you will join us in the new year for the January 14, 2009 webchat. The topic is "Newly Diagnosed / Living with Lupus," and it's hosted by Dr. Don Thomas.

Mark your calendars for that.

Get Some Great Holiday Deals / Bargains at LFA's Online Store

Lots of great things to share with you this morning, so let me jump in.

Shop the Lupus Shop's Clearance Aisle for Great Holiday Bargains

If you shop now, you can save 50% on cell phone charms, purple ribbon magnets and the "On a Seasonal Note" holiday CD.

Shop our clearance aisle today.


Give a Gift Subscription to Lupus Now Magazine

Celebrating its 5th anniversary, Lupus Now magazine makes a great gift for loved ones who are living with lupus.

And if you act now, you can subscribe to Lupus Now for 2 years for only $30 -- that's a 40% savings! Follow the link below, and select "2 year (domestic) - 30.00" from the drop-down menu.

Give a gift subscription to Lupus Now.

(new domestic subscriptions only)


Reminder: Depression and Lupus Webchat This Afternoon at 3 p.m.

Don't forget ... Dr. Herzog will lead today's Webchat on Depression & Lupus. Learn more about the chat here.

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.

Join the LFA's Webchat Wednesday, December 10. "Depression & Lupus" will be hosted by Dr. Al Herzog.

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, December 10, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Al Herzog, who will serve as the guest expert for the Depression & Lupus chat.

Dr. Herzog is a Professor of Clinical Psychiatry at the University of Connecticut School of Medicine. He has written on a wide variety of medical topics ranging from psychiatry to organized medicine and to the application of complexity science to the practice of medicine. He received his medical training at the University of Pennsylvania, was a resident in Internal Medicine at Hartford Hospital and received his psychiatry training at Yale. He is Board Certified in Psychiatry and is a Distinguished Fellow in the APA as well as the Society for Clinical and Experimental Hypnosis.

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.

Lupus Foundation of America Spotlight: Jerry Norton

This came across my desk recently and I wanted to share it with you.

A few years ago, Jerry Norton retired from the Air Force after 22 years. To stay active, he took up running. He really enjoyed it, and then decided to take on his first marathon, which he did for charity.

Then Jerry decided to challenge himself further … in 2007 he volunteered at the Las Vegas Silverman triathlon, which is a 1.2 mile open water swim, 56 mile bike ride and a 1/2 marathon. A total of 70.3 miles. After volunteering, he decided that he could do that and immediately signed up for the 2008 event, even though he’d never done a triathlon in his life. Jerry didn't even have a bike, and he hadn't swam in 25 years.

Jerry knew an undertaking that big needed an equally big motivator to keep him from coming up with excuses to quit. His wife had recently been diagnosed with lupus after about a year of misdiagnosis from numerous doctors. That's when he made the decision to do the triathlon for lupus.

“I know what she's been going through. There was no way I was not going to finish the event, knowing I was doing it for a good cause,” said Jerry. “It seems most people are totally unaware of lupus. I found myself … answering questions and raising awareness about lupus.” He continued “I even had a flier for a Walk for Lupus Now event put on by the Lupus Foundation of America. I made some calls, sent some emails and set up a fund-raising goal of $3,000.”

After hundreds of miles of training (swimming, biking & running), the day of the event finally arrived. Thunderstorms delayed the start of the swim for 1 hour. The bike ride was windy, rainy and hilly. Then the final leg -- the run -- was another brutal element.

It was the toughest thing Jerry had ever done but “it was worth every ounce of sweat to see my wife and my friends at the finish line, supporting me and the Lupus Foundation of America.”

He added “several friends were there, representing families who had lupus. They couldn't thank me enough for helping the cause. My goal of $3000 was accomplished, even with our country’s tough economic times. I still wish I could have done more. There's always next year!”

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.