lupus

When Liquor and Lupus Meet at a Party by Shanelle Gabriel

Originally posted on my blog on www.lupusnewstoday.com

“Shots! Shots! Shots! Shots!” The chant is repeated by my squad of friends at the bar. It’s my friend’s birthday and celebrations go hand in hand with alcohol. For many, it’s not a good birthday if you can walk a straight line at the end of the night. The definition of “turning up” is clinking plastic flute glasses around an overpriced bottle of rapper-endorsed liquor, dancing at whatever beat or pace the mixed drinks tell you to, and doing things that you will laugh about the next day over a post-hangover brunch. This was me in my 20s. Not anymore.

Unlike most people, I really started drinking after college. While partygoers sipped amaretto sours, I was usually too busy dancing and sweating profusely on the packed dance floor to think about fighting to get a bartender’s attention. Besides, water was free and I was a broke college student. When I graduated, I became an “adult,” which meant it was adult-like to go for a drink or two with co-workers, pair a glass of merlot with your steak, and pose with a glass of bubbly at your Pinterest-worthy picnic. The message is: “You’re grown; grown people drink.”

However, I learned early that alcohol puts my body in a climate ready and ripe for a lupus flare. It leaves me dehydrated and fatigued, and it makes some of my medications not work as effectively. My liver is already processing prescribed drugs; I’m somewhat paranoid about making it work any harder. So, where does alcohol fit in a Lupie world of medications and the need for ample hydration and rest? Do I have to turn down everything people do to turn up?

Telling someone you don’t drink is usually followed with, “Are you on antibiotics?” “What, you prefer whiskey? I have some here.” Or even a gasp and, “OMG, are you pregnant?” Telling a group of people you want to pass on a glass is equal to telling someone bragging about their amazing wedding that you just got left at the altar; it makes them feel self-conscious or judged for enjoying their day. People bond over liquor, and now it’s like you don’t want to bond with them.

I used to feel like I had to drink to make people feel comfortable, to be a part of my environment. I still feel that way at times. But at the end of the day, I really don’t need to drink to have fun as long as the music is good and my friends are present. My true friends won’t mind if I choose to drink in moderation and will gladly pour me a shot of ginger ale if it means I’ll be OK the next morning. Somehow, people think the drink makes the party, but it’s the people around me who make the celebration happen. I can have a fun time just being high on life knowing it’s a gift to not be in a hospital bed. Still want to sip a little somethin’ somethin’? Red wine has antioxidants, so that might be a healthier alternative (no more than a glass or two). Most studies, like “Alcohol and Arthritis” by the Arthritis Foundation, suggest that drinking in moderation on occasion isn’t terrible and that you ask your doctor if the general health rule of one drink a day for women, two for men, is the right one to follow.

The questions on why you aren’t drinking can be annoying, though. I have a fun trick that I use: I ask the bartender for a glass of pineapple juice mixed with cranberry juice, make sure they include a garnish, and sip it slowly. Most people assume there’s vodka in there and, boom, no questions. Cheers!

Join the Twitter #LupusChat on Sunday, Nov 13 @ 3pm EST by Shanelle Gabriel

Join me and the official host Tiffany Peterson (@Tiffanyandlupus) for a #LupusChat on Sunday, November 13, from 3:00-4:00 PM ET on Twitter.  GSK is pleased to sponsor and participate in the #LupusChat, which will focus on tools and tips lupus patients can use now to improve the patient/physician dialogue. Details are posted @Lupus_Chat and @GSKUS. Feel free to share!

Help for Lupies: What Do Your Lab Tests Mean? by Shanelle Gabriel

Being that I firmly believe in patients taking an active role in understanding and managing their illness, I did a google search and thanks to www.cure4lupus.org, I was able to find a detailed explaination of the standard Lupus bloodwork and lab test abbreviations and values. Hope this helps!
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Lupus Blog: Benlysta Blues by Shanelle Gabriel

Once a month, I get up when the sun comes up, put on some leggings and a hoodie, and head to SUNY Downstate for my monthly infusion of Benlysta. This process literally takes my entire day, from 8:30-3pm. Come follow me, follow me, follow me down the path to getting the only medication created to treat Lupus.

7:30am:
The only reason I can get out of bed is the promise of sleep during the long process at the hospital. On days I have been allowed to flex my hours and get to go to work late, it's a nice rest. So, I throw something comfy and quick on and take the train there (parking sucks in the area).

8:30am:
I arrive at SUNY Downstate Medical Center and get on the line for outpatient registration. Low and behold, the woman who totally ignores my good mornings and checks me in is absent, leaving the older, less speedy man to register everyone by himself. The struggle is real. This process has taken anywhere from 10-45 minutes, just to have them put the bill in the system and print me a paper. I say thank you and head to the 6th floor.

9:00am-
I get to walk through the Cancer ward of the hospital to the chemotherapy unit. "Wait, I thought you had Lupus?" Yep, I do but the same guy that mixes the IV infusions of chemo and dialysis treatments mixes the Benlysta for my IV treatment. It's a big room where everyone sits in a wide circle with their own sea-green leather recliner and loud ass personal TV so they can watch Maury or Divorce Court during their stay. Personally, it's not fun being surrounded by cancer patients since my mom passed away from cancer a few years ago and chemo did nothing for her. But a gal's gotta do what a gal's gotta do. I get my vitals taken and blood drawn to make sure I'm healthy enough to get a treatment that suppresses my overactive immune system. Ohh and they serve free breakfast. Yay. (I wish there was an emoji that indicated my extreme sarcasm). I'm greedy so I eat it anyways.

10:30am-
Yes, two hours later, the results from my tests come back. My Rheumatologist has to check the labs and evaluate them. If the results suck (meaning if there's a risk of infection from a low White blood cell count or something like that), then I get my meds raised, sent home, and told to come back in a week. If all is decent, the order is made for the guy in the basement to get his double-double-toil-and-trouble on and mix a bag of Benlysta. The nurse starts me on a drop of fluids for a bit until it's ready.

11:30am-
I have no clue what the Macbeth witch is doing but it takes him forever to mix & bring up the Benlysta. So in the meantime, I get my IV of Benadryl which prevents me from having any sort of allergic reaction...and knocks me out like Fight Night. Here is where I catch up on any missing hours of sleep and not even the man screaming his excitement for not being some child's father on my neighbor's loud personal TV can wake me. I do wake for lunch which I usually request to be the Tuna sandwich and salad, and give away the soda it comes with. (I never understood hospitals that serve soda and fatty food to its patients. I guess that's how they stay in business.)

12:15pm-
Finally, the bag of Benlysta makes its way to the IV line on the top of my hand. Still groggy from the Benadryl, I head back to sleep between answering work emails and the occasional phone call. This is the best part of the process: finally getting it and sleeping.

Almost 2pm-

Beep! Beep! The IV machine signals that I'm done. I get some more fluids to flush my veins, and the nurse removes my IV. Since I'm on blood thinners, it takes a sec to get the blood to stop flowing. Once it's safe, the lil bandaid goes on it, completing my time in the Chemo Ward. I get asked to schedule the next one exactly 4 weeks away by day, not by date. It can be difficult making this decision without consulting my job but I've been getting better at it.

Overall, I'm still on prednisone so I don't know how effective Benlysta is. My doctor swears it's doing something. I don't know... But it's a part of my world, Take care if it ends up being in yours.

New Blog Post: "Pills and Potions: When everyone knows the cure" by Shanelle Gabriel

The walls were a pale beige color, kind of a "mother of pearl" shade. No windows; just one door that remained wide open with a billion footsteps shuffling back and forth. This was my umpteenth time in the ER for complications with my autoimmune illness. My nurse was from the Carribbean (like many in this hospital in Flatbush, Brooklyn), and he had a thick Jamacian accent. He comes in to do a vitals check and then asks if I'm chronically sick. I tell him I have Lupus. I usually expect that to be followed with eyes that say "I feel so sorry for you. Shame. So young..." Instead he perks up. "Oh me kno' jus' de ting. See, me cousin sell dis drink a called Noni juice. It a purify ya blood an get ridda alla dat sickness inna' ya blood." I thank him but kind of wave him off. Before I leave the hospital after my overnight stay, this nurse hunts my room down and gives me a complimentary bottle of this liquid Noni cure. 

A few weeks ago, I was hanging with my friend JB and his friend. We got to talking over a bad Boston Market meal, and me having Lupus came up. The friend says, "What if I told you you could heal yourself?" I wonder where this conversation is going and what type of lifestyle change he's about to try to sell me on. He starts speaking about alkalinity and the body needing to be less acidic. I let him talk although I've heard this cure before. Later, he brings up leafy veggies and I say that I can't have too much vitamin K because of the blood thinners I'm on that prevent me from having, oh let's say, a STROKE, since I had a pulmonary embolism a few months ago. His only response: "Well stop taking them. You won't need them after a while, anyways." Everyone has the cure. 

I don't know a person with a chronic illness that hasn't gotten fed up with the constant stream of prescriptions doctors swear by that, due to side effects and blanket treatments, only seem to lead to a sea of pills. And when many of us have gotten fed up, all these "natural cures" on the Internet and in the media seem to be a better option. So we push away the prednisone and start juicing. We do cleanses and special diets. And our doctors freak the freak out. 

See, I don't blame medical doctors for pushing prescriptions. Many of them were not required to take a course on nutrition or the healing power of foods. They are so technically and chemically trained that they cannot fathom something helping without knowing how. They need a carbon + oxygen+phospholipid trail to make it make sense. They can't state "I have no clue why, but it works." And because they don't know how it works, many of them don't prescribe it. So we're left to figure it out on our own, for better or worse. 

Don't get me wrong, I believe in the power of Eastern Medicine. However, I know that when that fails me, I'm running right back to a Western doctor faster than a veteran nurse can put in an IV. I have done the extreme switch from pills to potions... And gotten even more sick (and broke) than when I started. I believe good health comes from a healthy blend of the two, a balance of preventative and restorative medicine. I take plaquenil to improve my condition and Dandelion root tea to clean my liver. I eat a whole foods diet, and I exercise and take yoga to de-stress, promote circulation, and improve joint function. But, I'm not afraid to get a steroid injection if need be. Any changes I decide to make to my diet or pill regiment, whether my doctor likes it or not, I let her know so that if anything goes really wrong, she knows where the source may lie. And to all of the people with their magical healing concoctions, medical conspiracy theories, and tales of people curing themselves of cancer then walking on water, I tell them to email me sources (not just from the website selling the product swearing Dr So-and-so cosigns this therapy) and say thank you. I don't allow people to make feel guilty for trusting a medical professional over an anointing from a pastor because I believe God gave mankind wisdom to come up with treatments for various illnesses. Yes, I know capitalism and greed very well might be the reason we see more treatments and less cures today. But just as each body, person, lifestyle, illness is special, you have a right to mix your own cocktail of pills and potions to suit your own special pallet. 

Recap: "The Purple Party" for Lupus (Featured in the LI Herald) by Shanelle Gabriel

Partying to fight lupus
(From the East Rockaway Long Island Herald)

Valley Stream resident Christine Miserandino and her family celebrated her 37th birthday this year in an unusual way. Instead of presenting Miserandino with gifts, the family hosted an “unbirthday party” to raise money for lupus research.

Called the Purple Party, the third annual event was held on Sept. 7 at Pompei Restaurant in West Hempstead and served as a launch for Miserandino’s new charity, the But You Don’t Look Sick Foundation. Miserandino said she was inspired to turn the idea of a birthday on its head as a result of her own experience with lupus. “I have been living with lupus for over 20 years. We started to throw an ‘unbirthday party’ to raise money for lupus research two years ago when I decided I didn’t need gifts, but I wanted to give gifts to others and grant the wish of someday living a life without lupus. I remember being younger, when I was first diagnosed with lupus and wondering if I would even make it to 37, so now every birthday is such a gift and a reason to celebrate,” Miserandino said.

(Read more here: http://liherald.com/eastrockaway/stories/Partying-to-fight-lupus,58364?page=1&content_source)

This Sunday, Sept 7th-> "The Purple Party" (and my performance) For Lupus! by Shanelle Gabriel

Hello friends, 

Please join me as I perform and celebrate the birthday of Christine Miserandino (long time Lupus advocate and creator of the "Spoon Theory") THIS Sunday, Sept 7th @ Pompei from 6:30-10:30pm for her annual 

"Purple Party for Lupus"

Place: Pompei Restaurant, 401 Hempstead Avenue West Hempstead, NY 11552
 
Event/ Ticket includes: 
● DJ & Dancing courtesy of Party Perfect NYC 
● Appetizers, salad, pasta 
● Choice of dinner 
● **Unlimited Beer~Wine ~Soda 
● Specialty Desserts and cake 
● Raffles, 50/50, Silent Auctions 
● **Swag Bags for every attendee worth MORE than the ticket! (last year’s bags were worth double the ticket price.) 

All for only $75!!
PURCHASE TICKETS HERE: https://www.eventbrite.com/e/the-purple-party-dinner-dance-tickets-12454444579

Wear Something Purple!!!!

All proceeds go to the But You Don't Look Sick Foundation, dedicated to helping those living with Lupus (like myself!) 

 

See me rock and strut my stuff @ "Runway for a Cause" - Baltimore, MD by Shanelle Gabriel

 

Come see me sing and strut my stuff on the runway at the "Runway for a Cause" Benefit Fashion Show for Lupus THIS SUNDAY, August 24th from 3-7pm @ The Gala Center in Baltimore, MD. Also featuring Vanessa Rae Bent, DJ Tweety, gift bags by Sephora, a light buffet and more!
Tickets can be purchased at the door or here:http://oterialstylz.ticketleap.com/runway-for-a-cause/

 

 

 

Come Party for A Cause on June 10th in NYC by Shanelle Gabriel

Join Us June 10th for the 2014 Night for the Fight!

Featuring sponsored open bar, hors d'oeuvres, luxury raffle and live auction.

Night for the Fight

Hosted by Shanelle Gabriel

With Special Guest Ashlee White

Founder of Styletto Life and Cast Member of BravoTV's LI Princesses

DJ set by DJ Click'N'Press

#NightForTheFight

Purchase Tickets

Date
Tuesday, June 10, 2014
7PM – 10 PM

Location
Hudson Terrace

621 W. 46th Street (between 11th and 12th Avenues)
New York, NY 10036
Map

**Ticket price: $120

* Must be 21+ to participate

Purchase Tickets

Donate

If you cannot attend the event but would like to contribute,
donate to the S.L.E. Lupus Foundation.

Enter for chances to win exciting raffle and auction prizes
throughout the night.

Raffle and Auction Sponsors:

*As of May 20, 2014

SoulCycle, Kiehl's, Essie, Uber, Eventi Hotel, Finishline Physical Therapy, 5 Napkin Burger, Comedy Central, Estee Lauder, Nike Air, NYSC, NBC, Redken, and MORE!!

My Interview with HuffPost Live & Dr. Marc Lamont Hill by Shanelle Gabriel

I was blessed to be a guest on Dr. Marc Lamont Hill's show on HuffPost Live to discuss Lupus alongside

* Sarah Stothers (RN & Health Educator for the Lupus Foundation of America; National Nurse Health Educator)

* Imani Perry (Professor at the Princeton Center for African American Studies; Diagnosed With Lupus)

It was a great discussion with a lot of great points on the need for awareness and what the battle against Lupus looks like. Check it out!

 

Footage from the 2014 World Lupus Day Flash Mob by Shanelle Gabriel

Myself and the S.L.E. Lupus Foundation's Young Leaders took Lupus Research to the Power of 10 in recognition of World Lupus Awareness Day May 10. A Flash Mob of volunteer dancers brought attention to lupus among hundreds of visitors to Union Square Park in Manhattan. Here's the video!!

Updates: Show in NYC, DC, and Lupus Fundraising! by Shanelle Gabriel

To have me perform / speak / teach a workshop at your college, school, conference, church, etc, email me at info@shanellegabriel.com
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Hello dear! 

I'm officially over the snow. Last week was awesome. I performed at Ingrid B's 12th Anniversary Show at the Bohemia Room & ran the 2014 Miami Half Marathon, but came back to NYC just in time for a snow storm. Great. But at least I got away for a while. On my way back up north, on Feb 3rd, I made a stop in DC to speak at the National Institute of Health's announcement of their collaboration with several major pharmaceutical companies to create targeted therapies for several diseases. Read about the experience at www.shanellegabriel.com/blog! Shout out to the United Methodist Church of Yellowstone as I prepare to speak at their Youth Conference in Montana next weekend. YAY! And now... THE UPDATES!
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PERFORMING in NYC ON FEB 11TH @ 7:30PM

I'll be performing in the series "The Diaspora - Diaspora: Celebrating Black History Month" showcasing the 
featured work of contemporary African-American, Afro-Caribbean & African poets. It will be at the world-famous Nuyorican Poets Cafe (236 E 3rd Street bet Aves B & C, Lower East Side, NYC) This show features myself, Samantha Thornhill, Charan P, Mikumari Caiyhe, and the Mighty Third Rail. 
Sign up for the Open Mic!
Admission $7 at the door, $5 with Student ID.
 You can get them online at www.nuyorican.org.

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PERFORMING IN THE DMV AREA (New date) ON FEB 18TH @ 9PM

So we're gonna try this again! The snow cancelled the show last time, so this is it! No snow in sight! I'll be performing in this dope show called "Body of Work" on February 18th @ 9pm. It's basically a one-woman, one host, one DJ show that I'm headlining in at Busboys and Poets in Hyattsville, MD. (5331 Baltimore Ave, 20781). Tickets are $7 (that's like nothing) and you can get them online on the day of the show at www.busboysandpoets.com.
I hope you can make it! Share with a friend!



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FUNDRAISING FOR LUPUS AS I RUN THE 2014 NYC HALF MARATHON
 Soooo, I decided to take my love of running and my passion for helping people like me who are living with Lupus, and push myself to run the 2014 NYC Half Marathon on March 16th to benefit the SLE Lupus Foundation. 

http://www.crowdrise.com/LupusNYCHalf2014/fundraiser/shanellegabriel#

As much as I HATE running in hilly-ole Central Park, I hate being achy, having chest & joint pain, fatigue, headaches, rashes, abnormal blood work, and having to see dozens of doctors on a regular basis even more. So I'm running to raise money for the SLE Lupus Foundation which helps provide patient support and funding for research for those living with Lupus. 

I'm asking for donations of $10, $20, $50, whatever you can to this cause. If 50 of my friends donated just $10, I'd be almost to my goal!!! 
$10 is one mixed drink in a bar in NYC. Can you donate a drink to Lupus? :) 
Here is the link: http://www.crowdrise.com/LupusNYCHalf2014/fundraiser/shanellegabriel#

THANK YOU!

Stay Blessed,
Shanelle Gabriel

 

Help me as I run the 2014 NYC Half Marathon for Lupus! by Shanelle Gabriel

http://www.crowdrise.com/lupusnychalf2014/fundraiser/shanellegabriel

Help raise money for Lupus as I run 13.1 miles!!!

Sooo, I've been living with Lupus for almost 10 years... 10 years is a pretty long time to deal with joint pain, chest pain, achiness, lists of (toxic) medications, doctor & specialists, severe fatigue, anemia, abnormal blood tests, and more.

So I decided that this year, right before my 30th birthday, I'm going to combine my love for running with my love of helping people like me battle Lupus. I'm running in the 2014 NYC Half Marathon to benefit the S.L.E. Lupus Foundation with a goal of $1,500.

I'm on Team Life Without Lupus, which is the official competitive sports team of the S.L.E. Lupus Foundation and its West coast division Lupus LA, the nation’s leading organization providing comprehensive support services and research funding for the lupus community. 

Please donate to my page. $10, $20, $50, $100, any amount helps! 

http://www.crowdrise.com/lupusnychalf2014/fundraiser/shanellegabriel

$10 is:
- Like, two lattes at Starbucks
- A Big Mac Meal at McDonald's (if you still eat that)
- Okay, a burger and shake at Shake Shack
- ONE drink at a NYC bar

Can you donate a "drink" to Lupus?

 

Thank you so much for your support!

http://www.crowdrise.com/lupusnychalf2014/fundraiser/shanellegabriel

*We still have spots avaliable on our team. If you are interested in joining Team Life Without Lupus please apply at the following link --> http://www.lupusny.org/events/upcoming/2014/run-nyc-half-marathon-team-life-without-lupus

Life & Lupus: The Dreamkiller by Shanelle Gabriel

Someone once told me that living through your twenties is all about losing the fantasies of your teens. As you add more years to your life, it can feel like you're adding more reasons to be pessimistic. Being diagnosed with Lupus the year before I could drink legally meant I started losing those teen fantasies a little early. At nineteen, it seemed like I had a hundred mountains I wanted to climb, seven seas to swim, and a encyclopedia of a to-do-list I planned on attacking prior to dealing with this autoimmune disease. Reality has a way of settling in when it hurts to keep up in your college Hip-Hop dance team and when your mom suggests you take a semester off to "rest a bit." Granted, I wasn't about to sit in the house for the rest of 2005 so I went back to school, but the craziest thoughts cross your mind during silent painful walks from class to your dorm room. 

 

"Why am I even here? Am I fooling myself for having goals and plans for my life knowing my body will fight my mind for control every step of the way? Who am I if I can't accomplish these dreams I've had all my life?" 

 

I never shared these thoughts with anyone because I knew I'd get those Reading Rainbow responses: "You can be anything you want to be, if you just believe." (*Struggles not to throw up.*) We're adults now, and we know that we cannot fly two times higher than butterflies, especially with that butterfly rash on our faces. Many of us got our realities handed to us along with test results and had to grow up pretty early. 

 

It helps to realize that this painful end to optimism doesn't just hit those of us with chronic illnesses. As many of my friends are entering their late twenties and crossing the ("dun-dun-dun") thirties, they're asking themselves the same questions we are. I'm not the famous singer I thought I'd be when I was 16. I'm not the radio announcer/ A&R / wife & mother of 3/ homeowner / CEO of a non-profit that I swore I'd be when I was 22. My present life is nothing like I planned, and that is in part due to dealing with this illness and part in realizing that you can't put a timeline on certain things. 

 

Having Lupus with its unpredictable flares and remissions makes planning for life hard. Shoot, life makes planning for life hard. Depression can come from the way an illness and struggle can seem to kill dreams. I've learned one way to overcome it: FIND A NEW DREAM. I may not be the the mother and wife I planned on being at my age, but I'm consistently working towards my new goal of being an amazing aunt and an inspiration to my nieces and nephews. My friend Judith Mills may not be the track star she was on the path to be before her diagnosis but it lead her to become a biology teacher and founder of an organization working to provide Lupus medication to countries in Africa. Your illness may have stopped you from being a lead dancer at Alvin Ailey but maybe this will lead you to a new dream of running a non-profit that provides ballet shoes to under-funded arts programs. 

 

They say when there's a closed door, God opens a window. I know it isn't easy to step away from the door you've been walking to all your life, but that window may lead you to a grander purpose then the original path you were on. The same way you surprise yourself with your ability to deal with everything your illness throws your way, you'll be surprised at the skills you have that you didn't even know you possess. Aim to focus less on what you can't do and more on what you can. Find the hidden passions within you, and maybe your new dream can become a reality.

"Kicking it Back for Lupus" at the Village Pourhouse NYC TOMORROW! by Shanelle Gabriel

Join the SLE Lupus Foundation TOMORROW, November 27th for Kicking it Back for Lupus at the Village Pourhouse. Drink specials and a few couple of FREE raffles...who wouldn't love to come out and support this great cause?! It's going to be a great night! Check the info...
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The Official Rules of Dating While "Dating" Your Chronic Illness by Shanelle Gabriel

With doctor visits, prescription pick-ups, bed rest, and flares, who has time for dating??? While the idea of "searching for the one" seems to have been replaced by searching for the right rheumatologist or specialist, you and I both know that there's a part of us that would like a special someone in our lives. But how do we date when we seem to have baggage from our relationship with our chronic illness?
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FREE ZUMBA GOLD Fitness Class for People with Chronic Illnesses by Shanelle Gabriel

Come join the SLE Lupus Foundation along with instructor, Dayle Patrick, certified Zumba Gold instructor for a free class on Thursday, November 15th @ 7pm. Zumba Gold is a modified version of Zumba reserved for older participants and people with limited mobility... It’s perfect for those with chronic illnesses! RSVP NOW to guarantee your spot!
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Join Me or Donate As I Walk to Cure Lupus THIS SATURDAY at South Street Seaport! by Shanelle Gabriel

On Saturday, October 20th, 2012, I will be participating in the 2012 New York City Walk with Us To Cure Lupus Walkathon. Join me in the fight against lupus by making a pledge on my behalf, or becoming a member of my team and walking alongside me and my team, Creative Movement (http://walk.lupusresearch.org/goto/creativemovementnyc).
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