Brand New! Faces of Lupus II

Click on the image above to view the brand spanking new Faces of Lupus video presented by the Alliance for Lupus Research is now officially out! Please share it with any and everyone. You never know whose life you could touch.

The ALR One Love, One Cause Gala 2009

Taken from the Alliance for Lupus Facebook fan page

The Alliance for Lupus Research (ALR) held its annual One Love One Cause gala celebration in honor of its tenth anniversary on November 18, 2009. The evenings co-chairs Robert Wood Johnson IV, Chairman & CEO New York Jets, Robert W. Pittman, Chairman & Founder Pilot Group, LLC, Barry M. Meyer, Chairman & CEO Warner Brothers, and Vivi Nevo, President NV Investments, Inc. came together in honor of Richard Parsons, Chairman of Board, Citigroup Inc. The master of ceremonies for the evening was Maurice Dubois, Co-Anchor, WCBS-TV. Special guests included Heidi Klum, top fashion model and host of the Project Runway Show. A highlight of the evening was the ALR’s unveiling of its new Faces of Lupus video which will be available soon to be viewed by the public.

Wow, even Heidi Klum showed up to give her support to the ALR and lupus research!

Breaking News!

Just got this from the Alliance for Lupus Research....New Study Findings Represent a Critical Step Forward for People with Lupus Everywhere

Lupus and Misconception...

What are the most common misconceptions you encounter when dealing with lupus??? I am sure 'but you don't look sick,' get's very old and very frustrating. The invisible illness at times indeed. How do you comprehensively explain your fatigue to someone who has never experienced it?

Hey Atlanta!

The ALR needs your help for the ALR Walk with Us to Cure Lupus Walkathon on Saturday, October 24th at 9 AM taking place at Highwoods Century Center. Please contact mroberts@lupusresearch .org.

Brand Spanking New ALR Walk Web Site

Check it out. Sign up. Get involved. :)

Alliance for Lupus Research

Shared via AddThis

Faces of Lupus

Soooo...the Alliance for Lupus research is working on a new Faces of Lupus video to be rolled out in three parts via the web. With the great success of the last one I think we can expect something really special. If you never checked out the first one click here to view.

Acts of Kindness

Kansas City woman donates kidney to neighbor
A woman suffering from lupus needed a new kidney. She was in luck.

Gotta Love Chicago's Own The Blissters

Rockin out for a cure...

Bad News Bear and Lupus...

So I posted the following on my Twitter account...

ALRtweets: 1 of the kids N Bad News Bears is calld Lupus...inappropriate? funny? offensive? a combination? wht do U think...I am curious

I found the answers interesting. Here is a sampling of responses from Twitter and Facebook...

-That is so not funny or appropriate. If they had lupus, they would not joke about it.
-its combo of both but I'm not surprised because comedies satirically poke at every1 and everything...
-I say that ANYTHING that brings awareness to Lupus- GO FOR IT! lol There's not enough out there, despite us all trying hard to get it to be! I don't think there's anything wrong with something good coming of something bad

Not having lupus, I feel like it is hard for me to say what I may or may not find offensive. The conversation however is a good one.

She May Have Lupus, But Lupus Does Not Have Her

Check out the awesome Poquette's. They continue to inspire.

Living with Lupus

Potential New Drug to Treat Lupus

A new Human Genome study provides some very ecouraging news. Check out the full article in the Wall Street Journal.

Geoff Thomas Rides for a Cure!

Michelle rocks. And so does Geoff. So it is not surprising when you put the two together you get a great read. Check out Michelle's blog on Geofff and his bike ride for lupus here.

Teen 'has lupus, but lupus doesn't have' teen

The Poquette family from Connecticut simply put, ROCK Check out a story on Erika here

RIP Joe. We Will Miss You.

Putting politics aside I think we can all agree this is a tragedy. Please take the time to watch this video and see one of many whom we all fight for. Thank you to Kaylee Van Hoose Perkins fro bringing this to my attention. For more please visit the Alliance for Lupus research on Facebook here.

Why NEFE MARTIN Walks for the ALR

"I walk for lupus because it has affected my life drastically. My sister past away from Lupus Septmeber 3, 2007. She was 28 years old. The youngest person in the dialysis center. She was fighting her battle with Lupus for a 7 years, and it was just a little stronger than her. She is gone, She left 2 small children age 6 and 7 behind, and my mother ... Read Moreis heartbroken over losing her. When she past i wanted to die too. So I plan on fighting her battle for her until my demise. I will do the ALR walk in NYC every October. Rain or Shine. I dont need to be featured on here or myspace or anything. I think the people are most deserving are the people actually living with Lupus. Just wanted you to know that you dont have to have Lupus to be affected by it"

New Blog Alert

Awesome!


http://http://www.facebook.com/ext/share.php?sid=121771829288&h=Yr5mx&u=rbcJB&ref=nf

Why Do You Walk for the ALR???

Sue Scarborough Myrick says:

I walk for Lupus because after suffering for most of my life and being told it is all in my head I was diagnosed with Lupus. I want to raise awareness and help to find a cure to help prevent other families from going through what my family has gone through! My team is Sue's Sweeties Against Lupus and we are walking in Boston on June 13.

What is Lupus?

Here is a very informative site that really goes into depth about lupus and all it entails. Check it out here.

Dogs and Lupus

Dogs can have some types of lupus lupus. Who knew? Click here for the full story.

And above is a picture I found of a guy named Lupus. For real.

Former NFL Player Supports Lupus Research

Check out his truly great Eddie Kennison Foundation here.

"Walk with Us to Cure Lupus!" 5/16/09, 9AM, THEIS PARK, KC.

News Anchor Brenda Blackmon Supports the ALR

This is just awesome. News anchor Branda Blackmon talks about lupus, the ALR and the importance of the simple task of asking for help. Click here for the full story.

Matching Gifts Made Easy

Super easy new matching gift feature from the ALR. Check it out here!

Roland and Olympia the Lupus Research Supporting Felines

After Roland went outside to recruit his sister Olympia for the cause the two kittens were filthy! They were not too pleased with their bath however. Olympia can even be seen nearing Roland's ALR bracelet for comfort!

What do you wanna do with your life!? I Wanna Rock!!!

Join Chicago bands The Blissters and 1997, on Saturday, April 25 at LaSalle Power Company for a concert benefiting the ALR and ALR Chicago Walk!

7:00 pm, Doors Open
$10.00 Cover Charge, 100% Donated to the ALR and ALR Chicago Walk
Silent Auction and Raffle

Learn more about the Chicago ALR Walk here.

Erika's Crew from Connecticut Rocks!

Ansonia to host 5K walk for lupus research

Laura Poquette says she's pleased she and her daughter, Erika Poquette, 18, are able to bring the second annual 5K walk for the Alliance for Lupus Research to the Valley.

"We're glad we can hold the walk at Nolan Field this year," Laura Poquette said. "Last year, we held it in a more central location in the state, but it seemed most of the people there were from the Valley, so we changed the location."

The walk will step off at 10 a.m. June 27 at the track at Jarvis Field in the Nolan Sports Complex, 350 Wakelee Ave. Check-in starts at 9 a.m. The 5K (3.1-mile) walk around the track will be held rain or shine.

click here for the full story

Roland Doing His Part!

Roland (see a few posts below to read about Roland) went outside and recruited his sister Olympia for the ALR's quest to find a cure!

The ALR on Facebook...

With YOUR help has surpassed 500 fans! Let's continue to spread the word. And as the blog title says, Together, we will find a cure!

ALR Facebook Page

Gene linked to lupus might explain gender difference in disease risk

In an international human genetic study, researchers at UT Southwestern Medical Center have identified a gene linked to the autoimmune disease lupus, and its location on the X chromosome might help explain why females are 10 times more susceptible to the disease than males.

For the full story click here

April Declared Lupus Alert Month

The Pennsylvania House of Representatives voted unanimously to approve this resolution.
Click here for full story.

And in additional news April also happens to be the month of my birth!

Debbie's Reason for Why We Need a Cure

My 30 year old daughter was diagnosed in May '09. She is a single mom of 3 boys and all of them live with me.These boys need her. She needs to watch them grow up and give her grandchildren. It tears me apart to watch her go from this vibrant young woman to someone who is in constant, daily pain. My grandsons have become used to her being on the couch not able to walk much. She can't take them to the park.They don't understand and I don't know how to tell them. All they know is the Mommy is sick again and that Mommy is in the hospital again.We NEED a cure. For everyone's sake.

Why do we need to find a cure for lupus?

Lupus Named One of the Top 10 Mysterious Diseases on MSN

It is listed along with a host of other autoimmune diseases. For the article click here.

Supporting Lupus Research!

This is my roommates kitten Roland. If you look closely you can see he is playing with an ALR bracelet. It is tied to a string and hangs on a rod. It is his favorite toy. Roland supports the ALR and lupus research. So should you!

Jessica's Reason for Why We Must Cure Lupus

Just read the post, My Teacher, My Hero by Jessica Pajaron over at http://walk.lupusresearch.org/site/News2?page=NewsArticle&id=11821&news_iv_ctrl=1061
and I was honestly moved. Here's a sample where Jessica is talking about her teacher who suffers from lupus:

She holds our problems as she withstands her own. She is my hero and my inspiration. She never once has put herself first.

I am sure her teacher is proud. You go Jessica!

Japanese Rugby!!!

Did you know Lupus means wolf in Japanese (so the internet told me) and there is a Japanese rugby team named the Toshiba Brave Lupus!

Your Fundraising Money for the ALR At Work

Genes and Genetic Pathways that Supress Lupus

Edward K. Wakeland, PhD - University of Texas Southwestern Medical Center - Dallas, Texas

Summary: Dr. Wakeland will use a new breed of lupus-prone mice to identify a gene, called Sles1, that suppresses the development of systemic autoimmunity and fatal lupus nephritis (kidney disease). The Sles1 gene does not affect normal immune functions, but specifically suppresses the development of autoimmune responses similar to those that occur in people with SLE. Dr. Wakeland and his colleagues have already localized the Sles1 gene to a very small region of the genome and will now use a variety of genetic strategies to specifically identify its exact location. They will then pinpoint the particular molecular pathways and immune mechanisms that the gene causes to suppress fatal lupus in mice.

What this study means for people with lupus: Identifying the Sles1 gene in mice and finding the molecular and cellular processes that it influences should provide new targets for lupus therapies and may lead to the development of drugs that can suppress the disease without impairing the immune system’s normal functions.

Why We Must Find A Cure For Lupus Now

Originally posted at http://www.facebook.com/topic.php?topic=8838&post=113783&uid=44101039807#post113783

Jennifer Desmond-Hall (Lansing / East Lansing, MI)

My name is Jennifer Hall and I am 34 years old.. I was diagnosed with Lupus in 2006. However, I believe I have had it much longer. I want to find a cure for Lupus, so I can be active in my childrens lives. I have missed school plays, Christmas mornings with my children opening their gifts. Those were heartbreaking moments as I sat in my hospital room, wondering what my future held. This disease attacks anything and everything. I have walked for ALR in Detroit for the last two years. I love ALR because 100% of all money goes to research. I pray that one day, there will be a cure, not just for Lupus, but many other awful diseases.

Great Blog!

Just wanted to give a quick shout out to the blog, Despite Lupus, which can be found here http://despitelupus.blogspot.com/ I urge everyone to check it out. Some really great stuff.

Cure Lupus Now

Check out this great post by Joyce to the question posed at http://www.facebook.com/topic.php?topic=8838&post=113527&uid=44101039807#post113527

"Why is it so important to you that we find a cure to lupus now"

Hi! I'm Joy and have had SLE Lupus since 1991 and I want a cure for Lupus so that I am able to help others when they need it and not have to cancel because I am sick.I have been affected by Lupus with severe fatigue,joint pain,pleurisy and lung involvement, some slight kidney involvement and CNS with lots of pain. If there was a cure I could go hiking which I loved.It is physically and emotionally a total drain of oneself. and we all get very discouraged but we are tough and will keep fighting the disease. We are fighters of Lupus but even fighters get weary. Please help us cure this disease. My dream is to be able to help others more and be able to completely clean my house without having to sleep like Rip Van Winkle!

Suzuki Owner's Club of North America to Ride for the ALR

Local business working to encourage, support motorcycle safety awareness
by Andrea Schneider

Stone Anthony, President and founder of the Suzuki Owners Club of North America (SOC), along with Joe Summers, Treasurer of the SOC Veterans Rider Group accepted a trailer donated by Homesteader, Inc. to be used on their Safety Awareness Tour of Tennessee. Anthony and Summers are pictured here with Dion and Anthony Mountain in front of the trailer Homesteader donated to the cause.
NEW TAZEWELL—Homesteader, Inc. will be supporting motorcycle safety awareness as one of the sponsors for the Suzuki Owners Club of North America’s (SOC) safety awareness tour of Tennessee.The SOC, an organization of Suzuki Brand motorcycle enthusiasts, is presenting an event called the 2009 Tennessee Roadway Safety Awareness Tour.The tour will consist of 76 cities in 76 days. According to information from the group’s official website www.suzukiownersclub.org, “The focus of the tour is to get everyone on the road to be attentive to motorcyclists, as well as other vulnerable road users when many more riders are taking to the streets. The more important part of this effort is to increase awareness among the non-riding majority.”Beginning on March 2, 2009 the SOC will be touring the state of Tennessee stopping at various locations in cities across the state. The tour will stop at a variety of different venues including Suzuki dealers, Homesteader Inc. dealerships, and Advance Auto Parts stores, to name a few.The tour will stop in Claiborne County at the Homesteader, Inc. dealership on May 4 and will be at that location from 10 a.m. until 4 p.m.At each stop the SOC will be selling tickets for a two giveaway bikes. Tickets will be sold for a chance to win one of two 2009 Suzuki C109RT motorcycles. The two giveaway bikes will be transported from city to city in a trailer donated by Homesteader, Inc. The trailer will also house two vintage Harley Davidson bikes. All the proceeds from giveaway ticket sales will be divided for various funds including the Alliance for Lupus Research, American Red Cross (Tennessee Chapters), the Wheels through Time Motorcycle Museum, Motorcycle Awareness Foundation of Tennessee, Bikers against Child Abuse, and the SOC. For more information on the tour visit the SOC official website at www.suzukiownersclub.org and click the “Cruising for Awareness” link.

view the original story here:
http://www.claiborneprogress.net/pages/full_story?page_label=home_top_stories_news&id=2021976-Local+business+working+to+encourage%2C+support+motorcycle+safety+awareness&widget=push&article-Local%20business%20working%20to%20encourage,%20support%20motorcycle%20safety%20awareness%20=&instance=secondary_news_left_column&open=&#cb_post_comment_2021976

Great Facebook Group

Really super group I stumbled upon over on Facebook, Kristine's Alliance for Lupus Research page. Check it out!

http://www.facebook.com/group.php?sid=690f16c5e7adc5ccc80788069687ddd1&gid=36992581958

House M.D.

I do enjoy the show although Hugh Laurie's crankiness has gotten a bit grating in the past two seasons. It is interesting how the writers so often refer to lupus as the potential cause of whatever ailments that episodes patient is facing. It makes sense due to the difficulty to diagnose the disease and the myriad of symptoms that are associated with it. I am conflicted though in that while it does bring a criminally underexposed and understood disease some well needed attention, I wonder if it makes lupus seem almost so rare and almost less severe. This is evidenced in the now almost catch phrase "It's not lupus." Google it and you will see t-shirts among other items with this emblazoned on them. While the line itself is clearly in reference to the show, most have a depiction of House's face on them, this phrase has also raised itself in perhaps more disturbing ways. On the ALR YouTube channel www.youtube.com/myalr, I have noticed many postings by people after a very powerful video 'Faces of Lupus" who respond with this catchphrase, often with an exclamation point. These posts are generally taken down, but still what point are the poster's trying to make. Did they even watch the video? Is someone else's suffering cause for a cheap joke? Or is this all really no big deal at all. I am not sure. I would love to know anyone's thoughts...

Great Blog

I came across this blog awhile back and have been following it ever since. Highly informative and really interactive. Check it out here
http://lupusbutterflies.ning.com

Green Turtle Event March 10th!

A really cool event I came across on Facebook set up by some very motivated people. Thought I would repost. Good stuuf!

Dear Friends ~

As many of you know, 11 years ago my best friend, Danielle Garceau was diagnosed with Lupus, a life-threatening auto immune disease. Over the last three years we have been working effortlessly to raise money for lupus research. Last year, working in conjunction with the Alliance for Lupus Research and generous donors like yourselves, our teams alone successfully raised over $20,000!

On Tuesday, March 10th, the Greene Turtle in Fells Point has graciously offered to host a Funds for Friends event at their bar/restaurant. They will generously donate 10% of the entire days proceeds to the Alliance for Lupus Research (ALR).

Please spread the word and come to the Greene Turtle on Tuesday, March 10th to support this great cause. There will be great happy hour specials, beer pong and flip cup tables, and small raffle prizes to be given away! Stop in for a drink, stay for dinner and a fun time with friends!

If possible, please let me know by the end of February if you plan on coming - the Greene Turtle wants to be sure they have enough staff on hand to serve us!

We look forward to seeing everyone at the Greene Turtle in Fells Point on Tuesday, March 10th! Please come out and support a GREAT cause!

Thanks,

Katie Rigler

http://walk.lupusresearch.org/site/TR?pg=team&fr_id=2062&team_id=42900

***Recent Developments***

* In March 2008, a scientist discovered an association between a gene located on the X chromosome and the risk of developing lupus.

* In December 2008, GlaxoSmithKline and Dynavax Technologies Corporation announced a worldwide strategic alliance to discover, develop and commercialize novel inhibitors of endosomal Toll-like Receptors (TLRs) for the treatment of immuno-inflammatory diseases. TLRs are key receptors of the innate immune system that can induce strong inflammatory responses. This alliance will target autoimmune and inflammatory diseases, such as lupus.

*** Facts about Lupus ***

* Lupus is a chronic autoimmune disease in which a person's immune system mistakenly attacks the body's own tissue.

* Lupus can cause life-threatening damage to major organs such as the kidneys, lungs, heart and central nervous system.

* Right now, the only treatment for Lupus is immunosuppressive drugs.
The current treatments only fight the symptoms and manifestations of lupus, not the cause of the disease itself. Over time, the drugs are toxic and the side effects can be serious.

* Lupus is the leading cause of death among women with autoimmune diseases who are in their childbearing years (ages 15-45).

* Women are five times more likely to die from lupus than men, and African Americans are three times more likely to die from lupus than Caucasians.

* Between 1979 and 1998 there was an approximate 70% increase in lupus deaths among middle-aged African American women

YouTube

Check out the Alliance for Lupus Research on YouTube at www.youtube.com/myalr
Feel free to comment and link to your own channel.

2009 Spring ALR Walk with Us to Cure Lupus Walkathon

Put on your walking shoes people! The Spring ALR Walk with Us to Cure Lupus Walkathon season is almost upon us, with many kickoffs already having taken place. Don't miss out. Visit http://walk.lupusresearch.org/site/PageServer for more information. Like my title says, together, we willl find a cure!