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Thursday
Nov182010

ALR LA "Walk with Us" to cure Lupus!

ALR Walk in Santa Monica ~ November 13th was a perfect day to take a walk on the beach for Lupus Research. After raising awareness for the Alliance for Lupus Research Walk a few weeks earlier by getting "mic-ed up" for an interview on The Sound FM, a Los Angeles radio station. It was time to take steps for Lupus Research. I strongly support the Alliance for Lupus Research because 100% of every dollar raised goes directly to funding Lupus Research. Robert Wood Johnson started the ALR after his daughter contracted the illness. He wanted to help find and fund the research that will lead to a cure for Lupus. Robert Wood "Woody" Johnson also owns the New York Jets and my husband is an ex-New Yorker and proudly wore his NY Jets shorts and baseball hat supporting the man behind the Alliance for Lupus Research. The Alliance for Lupus Research website is www.LupusResearch.org


Wednesday
Nov172010

Toni Braxton Reveals She Has Lupus, Gets Lady Gaga's Support | Billboard.com

Yesterday I had the immense pleasure of spending some time with Toni Braxton at the Lupus LA 2010 "Hollywood Bag Ladies" event and if you watch the video in Toni Braxton Reveals She Has Lupus, Gets Lady Gaga's Support | Billboard.com you'll see that I created it! Lupus Awareness is fun!



Monday
Nov012010

"LA Lupus Lady" a Halloween costume that raises Lupus Awareness!


Not sure when I decided that I would be "LA Lupus Lady" for Halloween... After 26 years as a Lupus patient and a few years of being a Lupus advocate, I feel comfortable as @LALupusLady on twitter and once I chose my costume, or as my friend says my costume chose me. (Not unlike, a Lupus diagnosis...) I knew that I wanted to represent the strength and courage of the Lupus patient, the grace and beauty of being a Lady and most of all a sense that "raising Lupus Awareness is fun." The bright purple and orange are two colors of Lupus organizations that I support and advocate for. I enjoy finding the joy of Lupus and hope that you enjoy the video.

Amanda
@LALupusLady on twitter and "LA Lupus Lady" for Halloween!

Wednesday
Mar102010

One step for me, one step for Lupus.

Long time no blog... (I know... I could spend an entire blog apologizing about my procrastination issues or I could delve right into the reason I am writing right now...)

For the very first time, Lupus LA will have runners participating in the LA Marathon and the day before the Marathon, I am going to participate in the first Lupus 5K of the year. There are a number of lupus organizations who organize different Lupus Walks throughout the year. The Lupus 5K, in association with the LA Marathon, will benefit "Lupus LA". I am proud to be a member of Team Life Without Lupus. I do not run. I do not jog. My plan is to put one foot in front of the other until I am done. One step for me, one step for Lupus. If the mood strikes me, I will skip along a portion of the course as I realize how lucky I am. Lucky that I am healthy enough to get out of bed and take steps towards funding a "life without lupus". Each time I train (a.k.a. work out) for the Lupus 5K, I remember that there are Lupus patients who cannot walk, so I am walking for them. (To be honest, sometimes that isn't enough of a motivation to get moving--I know, bad Lupie!)

It is those times that I channel my alias, LA Lupus Lady, and know that I need to move forward for Lupus. I can "strut my stuff" while raising Lupus awareness. The notion of "strutting my stuff" comes from the Purple Lab NYC lip gloss "Huge Lips, Skinny Hips" shade Red Sole, whose name was inspired by the bright red bottoms of shoes designed by Christian Louboutin. When I put on this gloss with Hoodia (an appetite suppressant) inside it, even though I am donning my cross-trainers instead of stilettos I feel comfortable in my skin and my stride finds a swagger that was missing before. I find my "Red Sole Strut". The best thing about wearing "Huge Lips, Skinny Hips" while I am in training is that I look good and the gloss isn't sticky, so my hair doesn't stick to my plump pout. I feel the Hoodia working and while I am out on the street putting one foot in front of the other, I remember that I am wearing my Purple Lab lip gloss and I can "train" for 5 more minutes.

The best part of my Lupus 5K training is the "ritual soak" I take after a good long walk. I love combining Epsom salt with an essential oils and linger in the tub. After that I slather on the lotion and conk out. While I have not been remiss in my training for the Lupus 5K, I have been lacking in the fund-raising department... which leads me to post this now.

On March 20th, I am taking steps to raise Lupus Awareness. Please help by donating what you can to my effort for Lupus LA. Click on the link www.firstgiving.com/lalupuslady and donate what you can. Thank You!

Wednesday
Nov112009

Rachel Pally gets into the Loop for Lupus Awareness!

I was beginning to feel as if my actions were making a difference. In the name of LA Lupus Awareness, I was taking action. I had participated in a clinical trial to advance the cause of Lupus Research. There was a tweet from Alec Sulkin, a writer/producer of "Family Guy", @thesulk on twitter featuring Lupus for the punchline. I had given an orange Lupus Research bracelet and information to Constance Marie. {read more in my previous blogs} Yet I still had to let people know about Lupus LA's "Hollywood Bag Ladies Luncheon" -- one of the reasons I started LA Lupus Awareness in the first place.

The annual event is taking place on November 18 at the Beverly Wilshire Hotel. The Lupus LA event is fun and fabulous. There is a silent (and somewhat wild) "handbag" auction, this year's honorees are Melissa Joan Hart and Janice Arouh of Hallmark Channel and a fashion show by Versace highlights the event. With the luncheon in mind, I thought it would be perfect if I could get Melissa Joan Hart involved in my LA Lupus Awareness campaign.

Now I have a new found appreciation for the power of social media because when Melissa Joan Hart @MellyJHart tweeted about "getting into the loop" I felt LALA (aka LA Lupus Awareness) success instantl, as if getting Melissa Joan Hart to tweet was the official earning of the stripes.
Getting an orange Lupus Awareness bracelet and information to Constance Marie and having @MellyJHart 's tweet (specifically she retweeted me: "RT @LALupusLady did you know that @MellyJHart is going to be honored by Lupus LA on 11/18? please get into the loop before she does.") were great steps on my path to create and raise LA Lupus Awareness. As I mentioned before, I can be shameless and I began asking for and getting positive response wherever I went. I wore my orange bracelet and Lupus t-shirts on my daily errands and trips to the market. I had asked (via twitter) Sandra Bernhard if she would support me in raising LA Lupus Awareness. She did. Sandra tweeted "@lalupuslady that's a big job bless you of course i will support you #LA Lupus Awareness we've got to beef up our immune systems kids!" (I was bursting at this point)

The only thing lacking from my awareness campaign was pictures... I was determined to get evidence of my next "awareness action" on camera. In fact, I wanted to actually get someone in the loop (An orange elastic loop!). Thank goodness once again for social media. It was on twitter that I found out that Rachel Pally was going to be at her Pop Up Shop personally styling shoppers. Rachel Pally is a Los Angeles-based designer who understands a woman's body and her collection is a constant staple of California style. Rachel created the classic caftan dress and her jersey is perfect fabric for the easy-to-wear clothing she designs. It was kismet that Rachel was going to be in her shop. My only hope was that she would be as cool and fun as her designs.

As I entered the store, Rachel greeted me and finished up with stylists who were there to select some pieces for Drea DeMatteo to wear on a future episode of Desperate Housewives. Then Rachel turned to me and as we started talking about how she loved to wear long dresses everywhere even to the supermarket and post office, she handed me one dress after another to try on. I love her style; it seems effortless and yet so put together. I never would have thought to try on a black and grey floral print wrap-around dress. Usually I shy away from prints, but the floral pattern was subtle and the ultrasoft fabric simply made this dress a "must have" and a classic. Yet Rachel thought it would work --not only did the dress work but it flattered me. The dress hugged my body in the right places and floated as I twirled around the store.

Rachel is beautiful--her long brown hair and infectious smile, as well as her energy, made it easy for me to tell her about living with Lupus. I gave her an orange Lupus awareness bracelet and a brochure with information on symptoms of Lupus. Then I told her about how I started LA Lupus Awareness and I needed something to wear to the "Hollywood Bag Ladies Luncheon". With that, Rachel headed to a rack and handed me a basic black dress. It didn't look like much on the hanger, but once on it turned into an upper-body-hugging v-neck long sleeve dress that I could style in a number of ways. For the luncheon, Rachel said I should wear it with a black peep toe slingback; after the luncheon I could wear it with my black boots and take it anywhere from the post office to a Beverly Hills fund-raiser to shopping at Whole Foods. Rachel showed me to enjoy comfort and style wherever I go, and that you are overdressed as long as you feel pretty.

Rachel agreed to get into the loop for Lupus but only if I would join her. I happily present the picture of Rachel Pally and me in the loop for Lupus Awareness. I am truly grateful to Rachel Pally for getting into the loop for Lupus and especially for helping me achieve the first photographic evidence of a successful LA Lupus Awareness campaign.