January 30, 2008

Lupus Foundation of America Chapter Spotlight: The LFA Alaska Chapter

As it’s been a while, I wanted to take this opportunity to shine a spotlight on one of the Lupus Foundation of America's chapters. Specifically, the LFA Alaska Chapter. I am now turning the blogging reins over to them.

Until next time, Wick

LFA Alaska Chapter Has Lots of Ground to Cover

The LFA Alaska Chapter has been working hard to increase lupus awareness, as well as expand our reach into the far-flung regions of this huge state.

Since September 2006, the wonderful volunteers of our chapter have staffed more than 40 health fairs, providing information to more than 1000 Alaskans at these health fairs. We are so proud of our volunteers who give up their early mornings and weekends in order to provide assistance to people living with lupus.

As you know, Alaska is a huge state. Many towns and villages are accessible only by air or by boat. And on top of that, there is a high incidence of lupus in the Alaska Native population. Reaching the people in these villages has been a major goal of our chapter. We have devised two methods of reaching this under-served Alaskan population.

Method 1. These remote villages receive much of their day-to-day health care from Certified Health Aides who live in the communities. The Health Aides meet annually for training in Anchorage. The LFA Alaska Chapter has provided an information booth at this annual event for several years. We distribute pamphlets, verbal information, and copies of "The Lupus Book" by Dr. Wallace to the Health Aides. Educating the health care professionals who live in the villages about this life altering disease is a major step in helping to reach the people who can be most affected by lupus.

Method 2. We are sending brochures and posters to small towns and villages throughout Alaska via small bush planes and Alaska Airlines. The pilots and staff of the airlines put out our information at the airports. Most people who live remotely come to the airport to pick up mail and supplies. We have received several calls from villagers letting us know they have seen the information at the airport and would like to have additional information. Sometimes they just want someone to talk with about lupus. This small idea is helping us reach the populations of this huge state.

We recently received a call from the State Ferry System, wanting to know if they could have literature to display on their ferries. The ferry system is the major travel mode for most residents in southern Alaska … where folks live on islands and inlets where there are no roads. I guess our next goal is to reach out to the railroads.

If you live in Alaska, or you're interested in learning more about our unique outreach efforts, we’d love to hear from you. Contact us at LFA_Alaska@hotmail.com.

Best,
Anna Tillman
President & CEO
LFA, Alaska Chapter


Photo: Debora Griffeth and Michelle Watkins staff a health fair on behalf of the LFA Alaska Chapter.




January 28, 2008

Lupus Blog Spotlight: Sayangku Azura

Morning everyone.

Hope you all had a great weekend. Mine was pretty decent. Caught up with an old friend whom I haven't seen in months. That was fun.

Saw the movie Cloverfield. I thought it was ... ok. Overall I liked it. But there were some things that bothered me.

  1. The movie was only 1 hour 15 minutes. Come on ... that's a glorified TV show. If I'm spending $10 for a movie, at least entertain me for 90 minutes.
  2. Copied the “Blair Witch” style of camera work. Didn’t bother me, but also wished that hadn’t been the entire movie.
  3. There was no (clear) explanation given whatsoever as to why things were happening. I don't need things to be happily resolved in a "Disney-fied" ending (which this certainly didn't have). But a little explanation would have been nice.
And now to lupus news.

I'd like to give a "shout out" to another lupus blogger, this one being across the pond in the United Kingdom. Her name is Azura and she write a blog called "Sayangku Azura."

Here's a little bit about Azura, in her own words. "I'm a woman, a lover, a daughter, a good friend. A SURVIVOR. I spent my childhood in several parts of the world ... I've been running back and forth between England and Malaysia. I owned a business back then until SLE (an autoimmune disease that almost killed me) struck and made me paralyzed. I'm walking again, and want to build a successful business again."

As always, if you get the chance, please stop by Azura's blog and say hey.

Have a wonderful Monday.

Until next time, Wick


January 25, 2008

Lupus Blog Spotlight: Butterfly Girl - Living with Lupus

Morning everyone.

Today started off on a good note. A Starbucks opened across the street from our office. While I realize this is hardly earth-shattering, I dare say this is great news because several of my coworkers -- and me too -- love to be caffeinated. So a handful of us walked over, introduced ourselves and basically put them on notice that they'll be seeing lots of us.

Watched another movie last night. United 93. It was very well done, but it was very difficult to watch, given the subject matter. But I would recommend it. You may want to keep a box of Kleenex close by.

And now to lupus news.

It's time to shine a spotlight on another lupus blogger. I recently stumbled upon Butterfly Girl, who hails from Pennsylvania. She's a newbie to blogging. In fact, she only has 2 posts on her blog thus far. Her blog is called "Butterfly Girl - Living with Lupus."

This is how she describes herself: "Basically this is meant as a way for me to express my thoughts about being a 27 year-old woman living with lupus. I've had this disease for 11 years now and more than anything else I'd like to be viewed as someone without a disease. I am trying to live my life the best way that I know how. This is the first time I've ever written a blog, so please bear with me."

If you get the chance (and I see some of you already have), stop by Butterfly Girl's blog and say hi.

One final note. As you can see from the "Lupus Blogs We Read" section posted along the right-hand column, I've been fortunate enough to come into contact with more than 20 lupus bloggers ... not only here in the states but also around the world, like the UK and the Philippines. I think that's pretty exciting. And I look forward to meeting more of you.

Wherever you are ... have a wonderful weekend.

Until next time, Wick


January 24, 2008

Southern California Hosts Fund Raiser to Send Folks to DC for the Lupus Foundation of America’s Advocacy Days in March 2008

Good afternoon everyone. Another cold day here in DC. Hope you’re nice and toasty, wherever you are.

Wanted to pass along this information to our friends in Southern California. A lupus awareness group in SoCal is hosting a "Reading Relay" fund raiser to raise at least $10,000 to send 10 people to the Lupus Foundation of America’s Advocacy Day in D.C. on March 10-11.

The fund raiser is planned for Sunday, February 17th from 9 a.m.-9 p.m. To learn more about the “Reading Relay” fund raiser, visit the Flared Up website.

To learn more about the LFA’s Advocacy Day, visit the Advocacy Day section of the LFA’s Website.

Until next time, Wick


January 23, 2008

There's More To Lupus Than You Know: A Public Service Announcement Brought To You By The Lupus Foundation of America

Good morning everyone ... it's another cold day here in the nation's capital. Going to the low 40s today, which is warmer than it has been. I have been freezing the last few days so I'm dressed "in my snuggies" as my aunt would say. Perhaps a few hot chocolates would help take the chill out.

Quick reminder ... this afternoon, Wed., January 23 at 3 p.m. Eastern is the Lupus Foundation of America's Webchat with Dr. Peter Chira. Again, the topic is Teens & Lupus. We hope you can join us then.

Coming Attraction: Our Webchat on February 13: Women's Heart Health with Dr. Amy H. Kao.

And finally, I wanted to share another public service announcement (PSA) with you. This one is called There's More to Lupus Than You Know. It's a 30-second clip. Take a look.



If anyone reading this is interested in posting this PSA, or any of the LFA's PSAs, on your blog, please feel free to do so.

I wish everyone a great -- and warm -- Wednesday.

Until next time, Wick


January 21, 2008

Studies In Prestigious Medical Journals Report Exciting Findings in the Search for the Underlying Causes of Lupus

Several groups of medical researchers have for a number of years been studying the complicated genetics of the autoimmune disease lupus in humans and now this massive effort has begun to unravel some of the threads of this often confusing disease, according to studies published this week in the journal Nature Genetics and the New England Journal of Medicine. Two teams of scientists have identified several genes that are linked to lupus, an unpredictable and potentially fatal disease that affects more than 1.5 million Americans and at least five million individuals worldwide.

"The findings of these studies are significant. By identifying specific genes which may contribute to increasing an individual’s risk for developing lupus, it may be possible to develop new treatments aimed at the underlying problem instead of just at the symptoms," said Sandra C. Raymond, President & CEO of the Lupus Foundation of America, the nation’s leading nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus.

In the study published in the journal, Nature Genetics, an international team of investigators looked at over 300,000 genetic variants in a total of 2,566 women with lupus and 4,162 healthy people with no signs of the disease. Dr. David Karp, Chief of the Rheumatic Diseases Division of the University of Texas Southwestern Medical Center in Dallas and Vice Chair of the Lupus Foundation of America Medical-Scientific Advisory Council is excited about the findings. "They confirm in a very rigorous fashion some of the genes we already knew that were risk factors for getting lupus, but they also identified four new genes that are strongly associated with lupus and ten others that are possible risk factors."

In the second study published in the New England Journal of Medicine, researchers using samples from 1,311 people with lupus and 3,340 healthy individuals identified regions on two chromosomes that may contribute to individuals being predisposed to lupus. These findings were replicated in samples taken from another group comprised of 1,650 individuals with and without lupus.

There is a strong genetic (hereditary) component to lupus, yet no one gene causes the disease. Instead, the risk for a particular person is a combination of several genes acting together. In order to study all the genes that could lead to disease, it is necessary to have thousands of subjects -- both people with lupus and people who are healthy.

"These studies will pave the way for more research that will determine just how these genes lead to lupus," says Dr. Karp. "We need to know how the proteins made by these genes act both by themselves and in combination with each other and environmental exposures such as common infectious diseases. We need to learn whether we can use this genetic information to predict who will get lupus, or how severe it might be."

While there is still a long way to go to understand how these genes predispose to disease, least lupus researchers now at least have a hard fact from which to start. Sandra Raymond says the momentum that is building for discoveries in lupus research is very encouraging. "The results of these studies and other recent advances in understanding the origins of lupus give people with lupus, their families and health professionals hope that it may be possible to identify who may be at risk for lupus and prevent the underlying causes of disease activity."


January 18, 2008

Teens & Lupus: The Wed., Jan. 23 Webchat at the Lupus Foundation of America

Morning all ...

Ever notice that you don't realize how dependent you are on technology, until that technology is temporarily unavailable? Let's just say ... I've experienced that in the last 24 hours.

And now to lupus news.

Wanted to give you a quick reminder about the Lupus Foundation of America's second Webchat for January 2008.

This coming Wednesday afternoon, January 23, at 3 p.m. Eastern Time, Dr. Peter Chira, an instructor of pediatric rheumatology at Stanford University School of Medicine at Lucille Packard Children's Hospital, will host a Webchat on Teens & Lupus. (This was to have originally taken place in December and was rescheduled to Jan. 23.)

Dr. Chira graduated from medical school from Albert Einstein College of Medicine and completed his pediatrics training at Children's National Medical Center in Washington, D.C. and Children's Hospital, Oakland, CA. He did his pediatric rheumatology fellowship at Stanford.

Dr. Chira's research interests focus on improving the transition and educational process for adolescents with rheumatic diseases, including those systemic lupus erythematosus, and evaluating the role of information technology in this transition, with a past project looking at the role of an online chat room support group for teens with rheumatic conditions.

Currently, Dr. Chira is working on a project looking at designing a personal health record for teens with chronic health problems.

You can submit a question in advance.

We hope you can join us for the Webchat on Wednesday, January 23. It should be interesting.

Have a great holiday weekend, everyone!

Until next time, Wick


January 16, 2008

Coming Attractions to the Lupus Foundation of America's Lupus.org Website

Good afternoon all ... from a very chilly downtown Washington DC. It's sunny outside at the moment, but only 39 degrees.

Apologies for the lateness of today's entry. This week has turned out to be rather busy, with lots of deadlines (both actual and self-imposed) coming down the pike. What has diverted my attention from this blog, you ask? Well ... let me give you highlights of 2 of the many things I'm working on.

First, the Lupus Foundation of America will be launching message boards within the next several weeks. Those will be a nice complement to our existing Website, lupus.org. Message board categories will include: Recently Diagnosed with Lupus, Men & Lupus, Lupus Treatments, Teens & Lupus, and Employment / Insurance Issues. So be on the lookout for those.

Secondly, I'm redoing the content / architecture of the Donate Now section of lupus.org. Over the next month or 2, you'll see new content, reformatted content and more intuitive navigation in this section.

We're excited about these improvements to the lupus.org site. We hope you will be too.

And now, back to my deadline.

Until next time, Wick




January 14, 2008

Lupus Awareness To Get Huge Boost from Ad Council Campaign in 2008!

Lupus awareness will receive a much higher profile, and subsequently more visibility, later this year when the Advertising Council – which has created some of our most endearing pop culture icons, including Smokey the Bear, McGruff the Crime Dog, and the Crash Test Dummies – launches a three-year, $3 million national lupus public awareness campaign.

The initiative is sponsored by the U.S. Department of Health and Human Services Office on Women’s Health (OWH), in partnership with the Lupus Foundation of America. The Lupus Foundation of America is serving as the primary non-governmental co-sponsor for the campaign, and will work closely with the Ad Council to develop the campaign.

When it launches in mid- to late 2008, the lupus awareness campaign will include public service announcements on radio and television stations, in newspapers and magazines, on buses, subways, and billboards, as well as on the Internet. Additionally, the campaign will generate $30-$50 million annually in free media placements, and is expected to reach more than 100 million adults in the U.S. with life-saving information about lupus.

The multicultural advertising agency of Muse USA, based in Los Angeles, has been selected by the Ad Council to produce the campaign. The LFA worked with Muse USA and the Ad Council to organize a series of focus groups that were held over the past two weeks in San Antonio, Chicago and Los Angeles. In each city, groups of people with and without lupus were asked a series of questions about their perceptions of lupus, where and how they obtain information about their health, and their reaction to draft messages about lupus. The information gleaned from these focus groups, along with extensive public opinion research conducted by the LFA, will help the Muse USA creative team develop a very effective campaign on lupus.

This campaign will have a great impact on visibility for lupus, and is expected to greatly raise the level of awareness and support for the disease and those affected by the disease. We will keep you apprised of the campaign’s progress as it develops.



January 11, 2008

Lupus Blog Spotlight: The Life of a 20-Something With Lupus

Morning everyone.

It's a rather dreary day here in Washington, DC. Gray, overcast & drizzling. Even so, I am ready to relax this weekend, as this has been a very busy week. Last night, I finished watching Judgment at Nuremberg. Wow, talk about a powerful movie. And what an amazing cast: Burt Lancaster, Spencer Tracy, Judy Garland, Montgomery Clift and Marlene Dietrich. If you haven't seen it, and you're willing to spare 3 hours, I'd recommend it.

And now to lupus news.

I realized it's been a while and so I'd like to shine a spotlight on another lupus blogger I recently came across.

Her name is Miz Flow and she hails from Toronto. She is 25 years old and this is how she describes herself. "I'm just a normal 25 year old girl ... except for the fact that I have lupus. I'll admit ... it's not easy ... but lupus certainly doesn't define who I am. I've been away from school for a bit for health reasons, but I'm studying HR @ York University. I also work part time for a major bank. I hope that in the future when I finish school, I'll be able to work in the Human Resources department of the company I currently work for."

Miz Flow writes a blog called The Life of a 20-Something With Lupus. Check out her blog and say hi. As I've said before, it’s always interesting to gain some perspective on what it’s like to live with lupus in another country.

And ... wherever you are, have a great weekend.

Until next time, Wick



January 09, 2008

The Lupus Foundation of America's Top 10 List of Important Advances in Lupus Research & Education in 2007

2007 was a year of significant achievement in the fight against lupus, an unpredictable and potentially fatal disease that affects more than 1.5 million Americans and at least five million individuals worldwide. Public and private funding for lupus research greatly expanded, and new efforts were initiated to bring greater public awareness to lupus and its often devastating consequences.

Promising new targets for treatment were presented at major scientific conferences this past year as links between the laboratory and the clinic began to emerge. Most notably, several pharmaceutical companies are targeting an inflammatory pathway that has in recent years been recognized as critical in lupus, in hopes of developing new drug candidates.

The largest sources of funding for research on lupus – the federal government and the pharmaceutical and biotechnology industries – each boosted their support during the past year.

The U.S. Congress tripled funding for lupus epidemiological research funded through the Centers for Disease Control and Prevention (CDC) by providing $3.1 million to expand the National Lupus Patient Registry. In addition, the National Institutes of Health (NIH) awarded a $5 million grant to establish a new Center of Research Translation on lupus, and the Department of Defense (DoD) Peer Reviewed Medical Research Program (PRMRP) also awarded millions of dollars to support additional lupus research studies.

Private funding for lupus research also rose dramatically in 2007, as evidenced by the nearly two dozen clinical research studies conducted by pharmaceutical and biotechnology companies to test potential new, safe, and effective treatments for lupus. This progress in lupus research and development provided growing enthusiasm among people with lupus and their physicians that new options are on the horizon. The outlook brightened this year when several pharmaceutical and biotechnology companies announced encouraging results of their clinical studies.

The Lupus Foundation of America (LFA) in 2007 greatly expanded its own lupus medical research program, "Bringing Down the Barriers," due in part to a partnership with the Wallace H. Coulter Foundation, which has a special interest in lupus in children and in men, and in mid- to late-state translational research. With the addition of $2 million from the LFA and its chapters over the past year, the LFA has to date awarded nearly $20 million in grants to approximately 400 investigators at 100 academic and scientific institutions nationwide. Other private lupus foundations and organizations have also provided funding for lupus research.

Lupus awareness received a giant boost this year when the Advertising Council, which has created some of our most endearing pop culture icons – including Smokey the Bear, McGruff the Crime Dog, and the Crash Test Dummies – began work on a three-year, $3 million national lupus public awareness campaign. The initiative is sponsored by the U.S. Department of Health and Human Services Office on Women’s Health (OWH), in partnership with the LFA. When launched in 2008, the campaign will generate $30-$50 million annually in free media placements, and is expected to reach more than 100 million adults in the U.S. with life-saving information about lupus.

2007 will be remembered as a watershed year for lupus, during which decades of effort to address key gaps in the understanding of lupus and bring down scientific barriers began to pay dividends. These developments have resulted in building optimism and new hope for a better quality of life for people with lupus and their families who struggle daily with the life-diminishing and life-threatening consequences of the chronic autoimmune disease.

The Lupus Foundation of America has compiled a list of ten important advances in research and education that occurred during 2007. They are as follows:

1. U.S. Congress Expands Funding for Lupus Epidemiological Research and Education Programs

The Omnibus Appropriations Bill which funds the federal government for 2008 includes $3.122 million for the Centers for Disease Control and Prevention (CDC) to continue and expand the National Lupus Patient Registry, as part of a broader national epidemiological study on lupus. The Registry will provide data for the first ever comprehensive national study to determine the true incidence and prevalence of lupus in the United States, as well as measure the burden of the disease. The legislation also reinforces Congress’ commitment to support lupus public awareness and professional education programs funded through the U.S. Department of Health and Human Services Office on Women’s Health.

2. NIAMS-NIH Provides $5 Million to Establish Center of Research Translation (CORT) on Lupus at University of Texas Southwestern Medical Center and Baylor University

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS-NIH) in 2007 awarded $5 million to fund a new Center of Research Translation (CORT). These centers are designed to bring together basic and clinical research to help translate basic discoveries into new drugs, treatments, and diagnostic tests. The Center for Research Translation at the University of Texas Southwestern Medical Center in Dallas and the Baylor Institute of Immunology Research will study mouse models of lupus to identify the genetic background of developmental stages of the disease. The research is based on previous studies that have identified two major steps leading to lupus in mice, and is aimed at identifying similar stages in the development of lupus in humans.

3. NIAMS-NIH Issues Comprehensive Roadmap for “Future Directions of Lupus Research”

In the fall of 2007, the National Institutes of Health issued a comprehensive plan to guide future efforts for research on lupus. The plan document was developed with input from leading scientific experts from the lupus research community and beyond. The plan focuses on five major areas of research, including: disease etiology; innate immunity, acquired immunity and inflammation; target organ damage; pediatric lupus, special populations, and health services research; and diagnosis and treatment.

4. Department of Defense Provides Millions of Dollars for Lupus Research

The Department of Defense (DoD) Congressionally Directed Peer Reviewed Medical Research Program (PRMRP) awarded three new grants in 2007, bringing the total support for lupus research through the PRMRP to $5 million for important studies on lupus and lupus biomarkers. Because lupus is a complicated disease, biomarkers (useful blood tests) are needed to help predict which individuals are candidates for different treatments, how best to dose such treatments, and how to predict and detect side effects.

5. Pharmaceutical and Biotechnology Companies Increase Their Investment in Lupus Drug Development

During 2007, nearly two dozen clinical studies were underway on potential new, safe, and effective treatments for lupus. The companies actively recruiting clinical trial participants or conducting clinical studies during 2007 include Human Genome Sciences, Inc. (LymphoStatB™); Bristol-Myers Squib (Orencia®); Genentech, Biogen-Idec, and Roche (Rituxan®); MedImmune (MEDI-545); La Jolla Pharmaceutical Company (Riquent™); Merck, Serono, and Zymogenetics (atacicept); Genelabs Technologies (Prestara™); UCB (epratuzumab); and Aspreva Pharmaceuticals and Roche (CellCept®). These studies offer hope to people with lupus, their physicians, and family members that a better quality of life is within reach.

6. New Uses for Existing Drugs Show Promise in Treating Lupus

Preliminary data from a clinical study of the organ transplant anti-rejection drug CellCept (mycophenolate mofetil) showed that the drug achieved results that were equivalent to those achieved with intravenous cyclophosphamide (IVC), a toxic chemotherapy which has been used to treat people with lupus kidney disease (lupus nephritis) since the 1970s. Studies also have shown that CellCept is better tolerated than IVC, providing people with lupus and their physicians a safer alternative. Several studies also showed promising results for the cancer drug, Rituxan (rituximab) for treating central nervous system involvement in lupus and lupus-related kidney disease.

7. The Wallace H. Coulter Foundation Partners with LFA to Fund New Areas of Lupus Research

The LFA launched a series of bold new research initiatives during 2007 in the areas of mid-to-late stage translational research, lupus in children and adolelescents, and lupus in men. Funds for these initiatives were generously granted to the LFA through the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who passed away in 2006 at age 24 after a long battle with lupus. The LFA also supported studies in adult stem cell transplantation as a treatment for lupus in people with severe manifestations of the disease, research related to cardiovascular disease in women and African Americans with lupus, novel pilot projects which apply new and innovative approaches to advance lupus research, and initiatives to identify and validate lupus biomarkers.

8. Public-Private Collaborations to Improve Treatment of Lupus

In response to Food and Drug Administration (FDA) guidelines for new drug development in lupus, the LFA during 2007 engaged the international community of lupus specialist physicians to determine widely accepted definitions of mild, moderate, or severe lupus disease flares (changes in disease activity). The LFA organized three committees to adapt existing disease activity measures to the measurements of lupus flares. The LFA also took additional steps during 2007 to validate lupus biomarkers, a project which it has supported for the past three years. The LFA, the Gulfstream Company, and IBM collaborated to begin creation of a central database to compare blood samples from people with lupus with carefully collected clinical information about each person. To date, nine sites have received computer equipment from IBM to allow clinical information to be linked to these samples from within a central repository. The information will then be made available to international researchers. During 2007 the first data were being entered into this database.

9. Public Awareness of Lupus Will Grow Dramatically through Advertising Council Campaign

In partnership with the LFA, the Advertising Council and the U.S. Department of Health and Human Services Office on Women’s Health (OWH) entered into an agreement with an internationally recognized advertising agency to produce a national lupus awareness campaign that will include public service announcements on radio and television stations, in newspapers and magazines, on buses, subways, and billboards, as well as on the Internet.

10. Educational Opportunities for All People Affected by Lupus Expand in 2007

The LFA’s expanded Website, lupus.org, attracted more than three million visitors this past year. In all, more than 80,000 people viewed 17 live Webchats on a wide range of topics, featuring leading experts on lupus in men, lupus in children, participation in lupus clinical trials, and specific types of organ involvement. The LFA also presented its education program for people with lupus and their families, Lupus Now®: State of the Art Approaches from the Experts, in 10 more cities, reaching an additional 2,500 individuals in 2007, with two programs presented entirely in Spanish. Also during 2007, the LFA published three issues of its award-winning national magazine, Lupus Now, completely rewrote and redesigned all of its written education brochures, and further expanded its comprehensive library of fact sheets for specific audiences.



January 08, 2008

Someone You Know Has Lupus

Good morning. Hope everyone had a good weekend. Weather here in DC is warming up some -- in the mid 60s. It's nice, but unusual. We'll enjoy it while we can.

Saw another movie over the weekend, 1974's Murder on the Orient Express. This is also one of my favorite Agatha Christie books (right behind "And Then There Were None"). The movie had an all-star cast -- Sean Connery, John Gielgud, Vanessa Redgrave, Ingrid Bergman. I thought the movie was just ok. What ruined it for me was Albert Finney's portrayal of Hercule Poirot, one of the greatest detectives in all of fiction. In this movie, Poirot came across as a cousin of Peter Sellers' Inspector Clouseau. Kinda disappointing.

And now, to lupus news.

Quick reminder ... tomorrow, Wed., January 9 at 3 p.m. Eastern is the Lupus Foundation of America's Webchat with Dr. Tammy Utset. Again, the topic is New Year's Resolutions & Lupus. Specifically, the focus of the chat will be on the best ways to stay healthy -- and exercise -- when you have lupus. We hope you can join us.

Wanted to share another public service announcement with you. This one is a bit older, and is a 30-second clip. It's called Someone You Know Has Lupus.

Take a look.

Until next time, Wick






January 07, 2008

Pro Golfer Retief Goosen Designates Lupus Foundation of America for Generous President's Cup Contribution

Retief Goosen, a six-time PGA TOUR event winner, including the 2001 and 2004 U.S. Open Championship, recently designated the Lupus Foundation of America, Inc. to receive a contribution in the amount of $12,500. This generous gift represents a portion of the charitable proceeds generated from the 2007 Presidents Cup at The Royal Montreal Golf Club in Montreal, Quebec, Canada, which Goosen participated in as a member of the International Team.

The Presidents Cup is a unique golf event in that there is no purse or prize money. Players are not personally paid for their participation, but each competitor is allowed to allocate funds to chosen charitable causes. Goosen, who competed on the International Team for the fourth time in his career and scored two points for International Team Captain Gary Player, designated the Lupus Foundation of America to receive his contribution. This is Goosen’s second donation to the LFA, a cause close to his heart, as a member of his family has the disease.

More than $4.2 million was distributed to charitable causes from the 2007 Presidents Cup, a record for this prestigious competition and part of the nearly $18 million raised since the inception of event.

In addition to his six PGA TOUR victories, Goosen, a native of South Africa, has collected 22 tournament trophies around the world. His most recent win came at the 2007 Comercialbank Qatar Masters on the European Tour, helping Goosen to a ninth-place finish on the European Tour’s Order of Merit. Since joining the PGA TOUR in 2001, Goosen has finished inside the top 20 on the money list in all but one season.

The Presidents Cup, a team match play competition featuring 24 of the world’s top golfers – 12 from the United States and 12 from around the world, excluding Europe – is held every two years, and since 1996 has alternated between United States and international venues. This year, the U.S. Team retained the Cup from the Internationals in one of the most exciting and successful events to date.

January 04, 2008

New Year's Resolutions & Lupus: The Wed., January 9, '08 Webchat at the Lupus Foundation of America

Good morning all ... wanted to give you a quick reminder about the Lupus Foundation of America's January Webchat.

Next Wednesday, January 9 at 3 p.m. Eastern Time, Dr. Tammy Utset, from the University of Chicago, will host a Webchat on New Year's Resolutions & Lupus. Specifically, the focus of the chat will be on the best ways to stay healthy -- and exercise -- when you have lupus.

Dr. Utset attended the University of Virginia, graduating with a B.A. in Biology summa cum laude and then attended Yale University School of Medicine. At Yale, her senior thesis focused on lupus research in the laboratory of Dr. Joseph Craft, and she was awarded the Harry Lamport Biomedical Research Prize. After residency in Philadelphia, she was accepted by Johns Hopkins for her Rheumatology Fellowship program, and remained at Johns Hopkins to complete a Masters in Public Health in 1993.

Currently, Dr. Utset is collaborating in translational research projects on lupus nephritis and autoantibody production in lupus. As Rheumatology Fellowship Program Director at the University of Chicago, she trains and inspires the next generation of rheumatologists to pursue careers focused on lupus care and research.

You can submit a question in advance to Dr. Utset.

We hope you can join us for next Wednesday’s Webchat.

REMINDER: The December 2007 Webchat with Dr. Peter Chira -- on the topic of teens & lupus -- has been rescheduled for Wednesday, January 23, 2008.

Until next time, Wick


January 02, 2008

Lupus Now Magazine Wants To Know: What Website Inspires You?

Good morning everyone and welcome to 2008! I hope everyone had a good holiday season, and you were able to spend time with family and friends. My trip to Florida was very good; it was great to hang with the nephews (a 3 1/2 year old and a 1 year old) and catch up with some old friends.

Caught up on my movies (what a shock, I realize!). Saw National Treasure: Book of Secrets -- good, mindless entertainment; Tim Burton's Sweeney Todd -- was ok; 1953's House of Wax (starring Vincent Price) -- which I liked; and finally, 1978's The Fury (Kirk Douglas and Andrew Stevens) -- talk about a turkey.

And now to lupus news.

When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web.

In the "Opining Online" column in the Summer 2008 issue of Lupus Now, we want to print your answers to this question:

"What Website inspires you?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Website inspiration" in the subject line of your email. We'll print as many of the responses as we can.

Your deadline is February 15, 2008!

Until next time, Wick