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Entries in Alliance for Lupus Research (26)

Saturday
Apr212012

Putting it out there...

When I got the list of #HAWMC prompts from WEGO Health, I knew today's post would be an issue for me. There is no miracle cure for Lupus.  Thinking about the potential that one day, some day, there may be a cure for Lupus gives me hope.  One thing I knew for sure - if I kept up with the WEGO Health 2012 Health Activist Writer's Month Challenge (which I have, that in and of itself is a miracle) I knew I would not be blogging using the WEGO Health prompt.  

"Miracle Cure. Write a news-style article on a miracle cure.  What's the cure?  How do you get the cure?  Be sure to include a disclaimer."

One day a cure for Lupus will be found.  It won't be a miracle, but the result of a huge team effort.  When I was first diagnosed with Lupus 28 (almost 29!) years ago, it had been 28 years since the Federal Drug Administration had approved a new drug for use in Lupus patients.  It took the FDA another 28 years to approve Benlysta.  At this rate, I hope that research and treatments improve the quality of living life with Lupus.

I am part of the team that will help cure Lupus.  That is why I walk to be a part of team that cures Lupus.  One step at a time... I do what I can, which is walk.  I walk for those who can't.  This year, I plan to walk for (and talk about) the Alliance for Lupus Research three times in Los Angeles, New York City and New Jersey.  The first walk is a few weeks away.  I am going to walk in New Jersey at the home of the New York Jets, MetLife Stadium.

Your donation to my team "Lupus Awareness is Fun" could be the donation that helps the ALR find a cure for Lupus and that would be the "real" miracle.  Support my efforts for the Alliance for Lupus Research.  100% of every dollar donated to the ALR directly funds vital Lupus Research.

http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/542098945?px=1925494&pg=personal&fr_id=2870

I need a miracle. Lupus needs a miracle.  Will you donate what you can to help me believe in miracles?

Thursday
Apr122012

#WhatToDoWhatToDo for #HAWMC Day 12

It started when I was reading my Twitter stream.  I read a tweet from Dule' Hill https://twitter.com/#!/DuleHill that read "Twittersphere what should I do when the 100k milestone is passed? #WhatToDoWhatToDo"

I tweeted "@DuleHill donate $100 to the charity of your choice... when you hit the #100KClub or the charity of my choice @Alliance4Lupus #idea" That's what I did, the rest flowed on the Twitter stream...

Dule' tweeted "@LALupusLady @Alliance4Lupus I just did! - in Honor of you! Amanda Greene $100 #GreatIdea!"

Wow! I love Twitter. A $100 donation in my name to the Alliance for Lupus Research from Dule' Hill is cool on so many levels.  The most important way that the $100 donation is cool is that it provides me the ideal opportunity to share that 100% of every donation made to the Alliance for Lupus Research goes directly to fund Lupus Research.  The $100 donation is also cool because it is the "T-shirt" level for the ALR walkers.  Though I have already donated to my New Jersey Walk Team, I have not yet supported my New York City Walk efforts for the "Friends Against Lupus" Team walk held in October or my home walk the "Lupus Awareness is Fun" team whose walk doesn't happen until November in Los Angeles.

So now I need you help Twittersphere about what to do... do I use Dule' Hill's contribution for my NJ Alliance for Lupus Research "Lupus Awareness is Fun" team

http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/1800963909?team_id=68701&pg=team&fr_id=2870

or my Walk Page for the New York City Walk in October

http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign?px=1925494&pg=personal&fr_id=3010

or my Los Angeles (Home) "Lupus Awareness is Fun" efforts

http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/1800963909?px=1925494&pg=personal&fr_id=2990

This is a wonderful quandry to be in, don't you think? "What to do? What to do?"

This is my stream of consciousness post for WEGO Health's Health Activist Writer's Month Challenge Day 12, I talked about my Twitter stream hoping that counts.

Post Note: I wonder if Dule' remembers that we met almost 12 years ago when the Democratic National Convention was in Los Angeles.  I was the media coordinator for the Young Democrats of America Convention Kick-Off Party and his presence was requested.  Dule' at the time was playing Charlie Young on "The West Wing" and his arrival at the party made me a superhero in the eyes of the Young Democrats from inside the Beltway.  We briefly said "Hello" and he was ushered into the Knitting Factory VIP Lounge, a night I will never forget and looking back on it now made me want to continue advocacy even after I "aged out" of being a Young Dem.

My favorite @DuleHill tweet of the week has to be this one "@LALupusLady @Alliance4Lupus No problem! #BeatLupus"

Tuesday
Mar132012

i am a "Voice of the Lupus Community"

Have you heard me and my friends speak as a "Voice of the Lupus Community"on the ALR Podcast yet? What are you waiting for...

Here is an extended conversation led by Courtney Love of Alliance for Lupus, where we talk about the impact of the Lupus community connects and communicates using Social Media.  I was proud to join Tiffany Peterson of the Facebook page "Friends Against Lupus" @AgainstLupus and @TiffanyandLupus on Twitter. Geoff Thomas (who lives in Australia) of the Lupus Magazine @LupusWorld and rode his bike across the United States to raise funds for the ALR and awareness for Lupus.

Once you click on the link below, make sure to listen to Part 1 of the podcast first... then listen to Part 2!  I am biased but I think you will learn a lot and hopefully be inspired to #GetInOnIt with the Alliance for Lupus Research!

http://www.lupusresearch.org/news-and-media/alr-podcasts-1.html

To join the conversation, follow @Alliance4Lupus on Twitter, "Like" the Alliance for Lupus Facebook page https://www.facebook.com/allianceforlupusresearch and use the hashtag #GetInOnIt when you tweet ~ to support the Alliance for Lupus Research with a $10 donation Text LUPUS to #85944

Yet another reason why I believe that "Lupus Awareness is Fun."

Sunday
Nov202011

Walking for Lupus ~ my new "Normal"

Most people take it for granted that they wake up every morning get out of bed and go about their morning routine with no aches or pains.  Waking up with pain is part of each day of my life.  Each one of us has a perception of what “normal” looks like.  Living with Lupus is realizing that your "normal" is unlike anyone else's--even another patient suffering from Lupus.  Each Lupus patient is unique and that is why funding research is so vitally important--so that together, we can eventually prevent, treat and cure Lupus.

After rereading Kellly Cutrone's book "Normal, Gets You Nowhere" I have come to realize with my “normal” (living with Lupus),  I may never know what I am going to get.  So why wait?  I am choosing to be who I am while I can.  I have chosen instead to be an advocate and patient support by using Social Media to share that "Lupus Awareness is Fun, because it is important!"   My passion is contagious, but Lupus is not.

Before the LA Alliance for Lupus (ALR – www.LupusResearch.org) walk, I went all over the west side of Los Angeles, covering the walls of local coffee shops and any place that had a bulletin board.

Then, on Halloween, I chose to “trick or treat” for the Alliance for Lupus Research.  As “LA Lupus Lady”, I an extra raised $57 on Halloween (dressing up makes it worth it) for my ALR Lupus Walk team “Lupus Awareness is Fun!” 

The bonus--and my favorite part of raising money for the ALR--is that 100% of every donation directly funds Lupus Research, thanks to the Board of Directors who fund all the administrative and fund-raising costs of the ALR.  That is virtually unheard of in the charitable community.

Last Saturday, November 12th at Crescent Bay Park in Santa Monica over 1,000 people gathered in celebrating the Los Angeles Alliance for Lupus Research “Walk with Us to Cure Lupus” event.  I was proud and honored to join Natalina Maggiano in holding the ribbon to start the walk.  Little did I know that I would be leading the Lupus Walkers along the famous Pacific Ocean path underneath the Santa Monica Pier.  I have never felt so good to be a Lupus patient in my life.  Advocating ffor Lupus research on Capitol Hill comes in as a close second--on this cloudy day in November, the palm trees were swaying and it was magical to be a part of the ALR team.

After the Lupus walk, when my purple boots and “LA Lupus Lady” cape were safely packed away.  the epsom saIt foot soak was done and I was tweeting with Tiffany of @AgainstLupus; we were talking about how it takes three days of prep and three days of recuperation to fully recover from a Lupus Walk.  I get especially excited before an ALR Walk event and tweet too much--too much energy is exerted before the first step is taken, which leads to less sleep.  That is not a good thing for a Lupus patient when you are trying to conserve your energy for a “Big Day!”

I know that this blog post is only a week late… but if you think about it, that's not bad for a Lupus patient recouping from an ALR Lupus Walk and dealing with family issues.  By the way, if you could send some prayers, meditations and healing vibes for my Grandma.  I would appreciate it.

Friend or Follow the Alliance for Lupus Research on Facebook and on Twitter at @Alliance4Lupus for the latest Lupus updates and information.  #GetInOnIt is the Twitter hashtag that that ALR uses.

Friday
Nov182011

Jingle Ball for Lupus and Support the ALR!

This was secretly announced at the LA Alliance for Lupus Research Walk last Saturday but now I can officially share the breaking news...

The Alliance for Lupus Research (ALR) would like to offer you the chance to attend the sold outKIIS-FM Jingle Ball event in Los Angeles, while making a donation to support lupus research! 

As part of a premier concert experience, we have available some amazing packages which include premium floor seating, passes to an exclusive VIP “Meet & Greet” party, and a backstage tour.  That's right...for a very limited time, we can offer these for $2,500.00 per package.  Hosted by Ryan Seacrest, this year’s Jingle Ball will take place on Saturday, December 3rd at the Nokia Theatre L.A. LIVE.  Scheduled performers include:

Lady Gaga

David Guetta

Flo Rida

Sean Paul

Gym Class Heroes

Taio Cruz

and many more!

For more information about how you can take part in this extraordinary concert experience and support the ALR, please contact R.D. Hinnen at rdhinnen@lupusresearch.org.

Lupus Awareness is Fun and Important ~ Thank You for supporting the Alliance for Lupus Research www.lupusresearch.org 

#GetInOnIt