Monday, February 15, 2016

Take this short Everyday Health survey. If you're reading this, you're the perfect candidate!

Have a few minutes to talk "Blog"?                                                            

Everyday Health has teamed up with HealtheVoices to gather insight into the impact of health blogs and online communities. They've come up with a quick survey so that readers can provide insight and feedback on why they read, when they read, and what they want from the health blogs they do read.

Image result for everyday healthThe survey should take less than five minutes, and it would be great to get your feedback. The 2016 HealtheVoices initiative was created specifically for online health advocates (like me!) with a focus on strengthening online communities (like this one!) I'll have access to the results, and would be happy to share once they're available. 

Note that all submissions are anonymous. Click here to check out the survey. 


Friday, February 12, 2016

Walk to End Lupus Now - DC Lupus Walk. Support the cause today through the LFA DMV!

4x1 DC Signature

It's time once again for the annual LFA DMV's DC Walk to End Lupus Now!

This year's walk, the Chapter's 10th, will take place on Saturday, April 2nd from 9am-11am (registration begins at 8am). The walk will take a brand new route this year - starting from the steps of the Lincoln Memorial, and proceeding around the Lincoln Memorial Reflecting Pool. You can learn more about the event here, and you can check out the FAQ's here. Register to walk, support a team, or submit a pledge. Just be sure to consider supporting a cause so close to your heart...and to mine!

You can also read more about the event in the Chapter's PSA below:

Displaying DC-W2EL-471.jpgDid you know that more than 80,000 people in our area have lupus?

Join the Lupus Foundation of America DC/Maryland/Virginia Chapter on Saturday, April 2nd at 9:00 am as they lace up their sneakers for the 10th Annual Walk to End Lupus Now at the steps of the Lincoln Memorial. Every step taken raises awareness and all proceeds support free services for people living with lupus -- a life-threatening disease with no known cure. 


For more information or to sign up and walk with us visit our website at www.lupus.org/dmv.

Friday, February 5, 2016

Advertising and Promotion Extraordinaire: Introducing my niece, Emma.

As a small business owner, I am extremely fortunate to be surrounded by friends and family who fully support my endeavors. I have many directions in which I can turn for help, and I know Pillbag/Despite Lupus headquarters wouldn't run as smoothly without that support system in place. 

My husband lends a hand on a daily basis, my girls cheer for every package that goes out the door, and my sister has worked enough gifts shows to last a lifetime. My mom has helped fill catalog orders calling for hundreds of pillbags, my in-laws generate sales like you've never seen, and I have friends who flaunt their pillbags to anyone and everyone who will listen. And that's just the beginning...

I am so thankful for that support, and it's hard to imagine where I would be without it. And yet, there is one young lady who continually goes above and beyond in her unwavering support and encouragement of my businesses, and that is my niece, Emma. From the day I published my book, she has taken a keen interest in my ventures, and she's never let up. She's worked gift shows, participated in pillbag videos, assisted in fabric selection, and weighed in on design and product development. She's chosen to use my book and my pillbags in mutliple class presentations, being sure to request samples for demonstration, and marketing materials for distribution, particularly during parent-attended school events. :) 

Emma is and continues to be an invaluable member of the Pillbag/Despite Lupus team, so I thought I'd share a glimpse of her most recent promotional efforts. Below, you'll find a Pillbag design color chart, where she's hand-drawn a replica of each Pillbag design. This visual was extremely helpful as I was deciding on the fabric combinations for our most recent Pillbags, the custom designed Pillfold Fabulupus and the larger, extended Pillfold Long Beach. Though not featured in the diagram below (as they were still in the design phase), both bags can now be found here!



And below is a copy of a recent class presentation - where she was tasked with providing a "How-to" (complete with a live pillbag demo) for her class. I couldn't have said it better myself! 

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Pillbags: A How-To by Emma R.

Do you ever want a more fashionable way to carry your medication? Do you ever get embarrassed to carry around pillboxes? Try a pillfold or pillpouch!

What’s a pillfold? A pillfold is a small bag that folds up to store your pills. There are eight slots that zipper closed so you can insert your pills into the bag. Seven out of eight have the days of the week and suns or moons. The eighth is conveniently blank, making it so one could choose what they’d like.

What’s a pillpouch? A pillpouch is a cute little bag with elastic straps inside so you can put your pillbottles in. It looks exactly like a little bag.

To use a pillfold, you sort your pills into the correct slots and zip them closed. To use a pillpouch, you insert your pillbottles into the straps inside and pull the drawstring to ‘cinch’ it closed.

These wonderful pillbags were invented by Sara Gorman, a victim of Lupus.  She hopes to make “more manly” ones, as she has them in pink and flowers and zigzags, etc.  For more information, look at www.pillfold.com.

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Wednesday, February 3, 2016

Another Lupus Nephritis study: paving the way for another FDA approved drug for lupus, I hope!

About six months ago, I blogged about a new study for lupus nephritis, which was designed to explore the efficacy of an immunosuppressant drug developed by a Canadian-based pharma company. I was so excited because for the duration of the study, you could remain on Cellcept. Unfortunately, I was ineligible for participation, due to my distance from a testing site, but I hope some of you were able to take part. I'm up for just about anything, as long as I have my beloved Cellcept running through my veins! 

This month, I am pleased to announce yet another lupus nephritis research effort which allows its participants to remain on Cellcept, this time from the folks at Genentech. They have announced the initiation of a Phase II clinical trial investigating the use of Gazyva (obinutuzumab) in patients with lupus nephritis. Details from the press release are below: 

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The aim of the this study is to compare the efficacy and safety of Obinutuzumab plus Mycophenolate, MMF, (also known as Cellcept), with Placebo plus MMF in Class III and IV patients with proliferative lupus nephritis. Lupus nephritis affects approximately 3 out of every 10,000 people. Up to 60% of lupus patients will develop lupus nephritis. (As a member of that 60% who developed lupus nephritis, I am thrilled at the R&D surge in this specific area!

“Lupus nephritis is a serious disease and if not controlled, lupus nephritis can lead to kidney failure,” said Brad Rovin, MD, Head, Division of Nephrology, Ohio State University at The Ohio State University Medical Center. “It is our hope that this trial will demonstrate that obinutuzumab is an efficient and safe treatment option for patients with lupus nephritis.”

Obinutuzumab is a CD20-directed cytolytic antibody and is indicated, in combination with chlorambucil, for the treatment of patients with previously untreated chronic lymphocytic leukemia.

“The initiation of this clinical trial reinforces Genentech’s commitment to finding a treatment for patients with rare diseases, such as lupus nephritis,” said Jeffrey Siegel, MD, Senior Group Medical Director of Immunology, Genentech.

Facts about Lupus Nephritis:
·         The body’s immune system targets it own body tissues with lupus. Lupus nephritis happens when lupus involves the kidneys.
·         For many, the first noticeable symptom of lupus nephritis is the swelling of the legs, ankles and feet, however, the disease may be “silent” and not cause any symptoms. 
·         Kidney damage from lupus can be mild or severe and cause damage to the glomeruli or the filtering units of the kidney.
·         If both kidneys fail, people with lupus nephritis may need dialysis.         
·         About 90 percent of people diagnosed with lupus are women.

Obinutuzumab is currently approved, in combination with chlorambucil, for the treatment of patients with previously untreated chronic lymphocytic leukemia. Visit http://www.gene.com/download/pdf/gazyva_prescribing.pdf for full prescribing information.

Monday, February 1, 2016

Chronic Pain Disorders honors lupus blogs!

The Best Lupus Blogs For 2016Here, at Despite Lupus, we are thrilled that Chronic Pain Disorders chose to feature a list of top Lupus blogs of 2016.  And we're even more thrilled (and honored) to have been included!

Check out their site here, and see the full list of great blogs. Chronic pain can be such a debilitating symptom of Lupus - so thanks for acknowledging our plight!