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Entries in Alliance for Lupus Research (26)

Monday
Jun112012

I am a "Savvy Auntie with Lupus"

I wrote a guest post... for SavvyAuntie.com Follow @SavvyAuntie and #SavvyAuntie on Twitter.

http://savvyauntie.com/expertisedetails.aspx?id=2959&GroupID=303&Name=Savvy%20Auntie%20with%20Lupus 

Tuesday
May292012

The Alliance for Lupus Research Walk Day at MetLife Stadium!

"Lupus Awareness is fun" and "I love it when my passion collide" two quotes that I can't say often enough.  Well on May 12, 2012, I had a wonderful day and my passions collided on the field at MetLife Stadium.  The Alliance for Lupus Research New Jersey "Walk with Us to Cure Lupus" took place at the home field of the New York Jets (okay, the New York Giants play football there too.)  I was smiling all day... okay if you have been reading my posts about my adventures with Tiffany (@TiffanyAndLupus on Twitter) then you know I had been smiling long before I woke up on the morning of May 12th.  The reason i traveled 3,000 miles was to walk with the Alliance for Lupus Research in New Jersey at MetLife!

with Tiffany in her butterfly wings, me in my purple cape.  "Lupus Awareness is Fun."

First things first, before we got on the field we dropped off our donations that were collected off-line, aka in person!  Every donation made to the Alliance for Lupus Research directly supports Lupus research because Woody Johnson and the Board of Directors funds all administrative and operating costs.

If are JETS fan like me, you know when a great play happens on the field that the players will "fly like a Jet!" to demonstrate their joy.  It was amazing for me to "fly like a Jet" and fly on a jet for the ALR!

The best thing about living with Lupus is the friendships I have developed within the Lupus community online.  There is nothing so special as hugging a friend and "Lupus Sister" in person.  Imagine the strength and support we felt gathering together in New Jersey to support the work of the Alliance for Lupus Research it was truly amazing.

Tiffany Peterson, Kelly Dawn Kelly and me (Amanda Greene) ~ three Lupus Ladies of Twitter, follow us @TiffanyAndLupus @KellyFund4Lupus and @LAlupusLady see you online or at the next ALR Walk!

Having my sister-in-law and niece joy my team on the field was incredibly fun!  Never underestimate the power of family love and support.  Every Lupus patient needs a support system, my team showed up and walked with me on May 12th, but they are there for me 365/24/7.

To enjoy the full album (There are a lot more pictures, I went crazy on the "Panda Cam" as my niece would say.) of my photos from the 2012 New Jersey  Alliance for Lupus "Walk with Us to Cure Lupus" event held at MetLife Stadium on May 12th. Click the link and enjoy... https://www.facebook.com/media/set/?set=a.3299085715203.2125917.1209711262&type=3

To learn more about Lupus from the Alliance for Lupus Research http://www.lupusresearch.org/about-lupus/about_lupus.html

To donate to my next Alliance for Lupus Research Walk ~ held in New York City on October 2Oth, as an incentive for you to donate to a walk that does not happen until October for any donation received for me and my NYC ALR Lupus Walkeffort made through June 1st! My husband is going to match it!  Every dollar truly counts (disclaimer up to $365) http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/75370776?px=1925494&pg=personal&fr_id=3010

Enjoy the rest of Lupus Awareness Month!

Hugs and Smiles,

Amanda

 

 

Friday
May252012

Collaborating for a Cure on World Lupus Day 2012

The real reason I traveled across the country was to celebrate World Lupus Day with the Researchers, Scientists and Members of the Alliance for Lupus Research team at the Collaborating for a Cure event on May 10th.  The event was held at the Marriot Eastside Hotel in the Foundation Room.  The Alliance for Lupus Research  team means everyone from President Ken Farber to Courtney, who directs the ALR's Social Media Outreach, to Lupus patients to the Alliance for Lupus Research's Founding Board Member Woody Johnson --who, as owner of the New York Jets, knows about making a team work!

The Alliance for Lupus Research celebration on World Lupus Day 2012 was amazing!  It is going to take a collaborative team effort to cure Lupus.  The people celebrating on May 10th are on the front lines of Lupus Research and Awareness.  I was honored to be invited to join this team.    The foundation of any team is how it collaborates.

http://www.lupusresearch.org/research/

  

Upon arriving at the "Collaborating for a Cure" event, I walked in the hallway when I met none other than Ken Farber, the President of the Alliance for Lupus Research.  It was a pleasure talking to Ken who welcomed me to the event and then we discussed how much Lupus Research has changed over the past 10 years.  Ken is a wonderful man who is dedicated to helping the ALR find a cure for Lupus.  The common theme for the night to me was connection.  I connected with Harvard doctors and researchers from all over the world.  The scientists and patient connection is a vital one.  It was nice to be able to be a "face of Lupus" and represent the Lupus patient community to the researchers who work so hard all year in their labs around the globe.

Connecting with other Lupus patients is as important as connecting with the Doctors and members of the Board.  I love hugging my Lupus sisters in person.  At this event, there was a lot of hugging going on.  We were there to celebrate the advances of the researchers and to support the Alliance for Lupus Research who donate 100% of every donation they receive directly to fund the innovative Lupus Research that the scientific board of review approves and the work of SLEGEN.

What is SLEGEN? http://www.lupusresearch.org/research/slegen/  

   

Ashley and Shanelle at the "Collaborating for a Cure" event... Lupus friends connecting and supporting each other, a real team.

Raise your hand if you are sure that the ALR will lead the way to a cure for Lupus.

                         

Connecting in person is more fun than an email, here I am with Courtney of the ALR.

ALR President Ken Farber talking about the teamwork and collaborations the Alliance for Lupus Research has done and is planning now.

Encore! Encore! @TiffanyAndLupus with the World Lupus Day sign on the red carpet at Lincoln Center - after lunch but before the "Collaborating for a Cure" event with the Alliance for Lupus Research. 

The Collaborating doesn't stop. You can help by taking action -- whether by using the hashtag #GetInOnIt and following @Alliance4Lupus on Twitter, or clicking the "Like" button on Facebook for the Alliance for Lupus, everything helps.  Of course, real support happens when you Text LUPUS to 85944 and a $10 donation to the ALR is made from your smartphone.  

World Lupus Day 2012 is over and Lupus Awareness Month 2012 is coming to an end but together with the Alliance for Lupus Research the path to better treatments and a cure for Lupus are on the road ahead.

Support me on my next Alliance for Lupus Walk in New York City! I am on the "Friends Against Lupus" team @AgainstLupus on Twitter with Captain Tiffany Peterson @TiffanyAndLupus http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/1326153232?px=1925494&pg=personal&fr_id=3010 Remember, every dollar counts as we take it one step at a time.

Together, my husband and I will match "dollar for dollar" any donation made to my ALR NYC Walk page (using the above link) through the end of May/Lupus Awareness Month 2012.  Any and every donation will be doubled (Hubby says I should add the disclaimer up to $365...), when you support me and the Alliance for Lupus Research you know that your money is supporting Lupus Research.  Thank you and Happy Lupus Awareness Month!

Hugs and Smiles,

Amanda

Wednesday
May162012

World Lupus Day with Wendy Williams!

I hope you had a Happy World Lupus Day on May 10, 2012!  I was in New York City to celebrate World Lupus Day on May 10, 2012.  I was lucky enough to be feeling good and was able to ask my friend and fellow "Lupus Warrior" Tiffany to join me in the festivities.  Tiffany (aka @TiffanyAndLupus) joined me at the hotel on Wednesday night.  That's when the #LupieSlumberParty began.  (more in a later post...)

The morning of World Lupus Day, my husband was able to get us into see "The Wendy Williams Show. " Tiffany made a sign (seen below) that we carried with us throughout our World Lupus Day adventures.                                                                                                                                                                                             

Once Tiffany and I were in our seats "The Wendy Williams Show" began, it was a great episode with Wendy's Hot Topics and Audra MacDonald.  Her other guests included Andy (@BravoAndy) Cohen who talked about his new book, "Most Talkative" and he played "Plead the Fifth" the game he usually asks the guests on his show "Watch What Happens Live" on Bravo!

However, before the show went live Tiffany was chosen from the audience to "get down and dance" with Kevin (the audience warm-up guy and hilarious entertainer) and "his boo" on stage.  How low can she go? C'mon Tiff... lower, we know you can go lower.

The Alliance for Lupus Research gave away special tote bags to the Researchers and Scientist who participated in the "Collaborating for a Cure" event.  After telling the Alliance for Lupus Research that we would be attending the live show the next day, they gave me a bag to give to Wendy.

The only time we were allowed to "shoot" Wendy was after the show... Wendy looked fabulous and her shoes (unphotographed, damn.) were amazing.  If you ever get the chance, I suggest you get on line and attend a free taping!

After the show, Tiffany and I were on our way back to the hotel, for a short break before lunch...

Stay tuned for more World Lupus Day fun...

"Lupus Awareness is Fun.  Lupus is not."

Tuesday
May082012

True Life Tuesday ~ Happy Lupus Awareness Month!

Happy Lupus Awareness Month! "You think you know, but you have no idea how truly excited I am to be heading to the East Coast to celebrate Lupus Awareness Month."  More specifically, I am heading to New York City for World Lupus Day and on May 12th I will be walking at MetLife Stadium in New Jersery with friends and family to support the Alliance for Lupus Research. http://lupusresearch.org/

At the beginning of May to celebrate Lupus Awareness Month, the ALR started a tumblr page and I am doing cartwheels (not literally) and jumping for joy (literally) Tumbling is fun and another way to connect using Social Media, follow the ALR tumblr page.   http://allianceforlupusresearch.tumblr.com/  World Lupus Day (May 10th!) is the one year anniversary of the ALR's "Get In On It" campaign.  Use the #GerInOnIt when you are on Twitter and head to the Alliance for Lupus Research Facebook Page and "Like" them today. https://www.facebook.com/#!/allianceforlupusresearch

Personally, to share that "Lupus Awareness is Fun" this Lupus Awareness Month I started a Facebook Page https://www.facebook.com/#!/LupusAwarenessIsFun I hope you like it.  I am still figuring out how the Facebook Page will grow and develop, but together the community will help.  I was really inpsired to create my Facebook Page after seeing the power of the Facebook Pages of the Alliance for Lupus Research and WEGO Health.

WEGO Health was the reason I blogged every day in April, they support the Health Activist Community and this post is their fault.  Thank you just doesn't cover it so to help me thank me. Like the WEGO Health Facebook Page https://www.facebook.com/#!/wegohealth  Did you catch the #HAroundtable for @wegohealth that @TiffanyAndLupus and I had to shine the spotlight on the Lupus blogging community.

This Sunday marked the first ever #LupusChat on Twitter.  @Lupus_Chat is moderated by @TiffanyAndLupus.  I was happy to be a part of the premiere chat and look forward to future chats.  Let's talk about Lupus.  The next chat is Sunday, May 13th at 3pm EST/12pm PST topic will be talking coping with Lupus and Motherhood issues in honor of Mother's Day. https://twitter.com/#!/Lupus_Chat

Thanks to everyone who is participating in sharing Lupus Awareness around the world.  I am grateful to the #chronicallyawesome @julianna12369 on Twitter of http://www.whatthejules.com/ and hubby @SteveLeblang who got Lupus Awareness Month started right with a wonderfully emotional guest post.

Lupus Awareness is Fun. Lupus is Not.

Happy Lupus Awareness Month!

Amanda