February 2014 Newsletter

Collaboration pushes forward to find treatments for lupus

scientistsBy Lupus Research Institute

Scientists are collaborating to accelerate the process for finding new treatments for lupus and other autoimmune diseases.

The Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI) are proud to join the National Institutes of Health (NIH)in the Accelerating Medicines Partnership (AMP) recently launched to work on new treatments.

The new $230 million collaboration will harness the collective knowledge and resources among the NIH, biopharmaceutical companies, nonprofit organizations and academic communities. Recognizing that no new targeted therapies exist for severe lupus, the new consortia will work to better understand the disease and uncover new targets for drug development. A total of $41.6 million is allocated specifically to the autoimmune diseases lupus and rheumatoid arthritis.
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It’s up to you to stop me from blathering. Please, take my survey.

Carie ShermanBy Carie Sherman

It’s been too long, but I’m back. And I need your help. First, a quick update.

Did you know Lupus Colorado has a new executive director? We said goodbye to Debbie Lynch in 2013, who recently retired after many years at the helm of LC. She’ll be greatly missed, but she’s left us all in great hands. I recently met with our new director, Inez Robinson. There’s one thing I know for sure: 2014 will be an exciting year.

Second, I’ll continue to write this blog. We’ve already built a nice community, but let’s be clear: This blog is about you. So think of me as your own personal roving reporter. What information can I provide to that would make living with lupus easier for you?

It’s easy to leave feedback. It takes five minutes and it’ll give me peace of mind that my babbling is of interest and helpful.

https://www.surveymonkey.com/s/R3BJFP3

Together, let’s continue building a community of people affected by lupus in Colorado and beyond. My goal is to bring together patients, caregivers, community members, and even health care providers, in the interest of making life with a chronic illness a little bit better.

Happy New Year!


The Lupus Card: A Gift from Me to You

Carie ShermanBy Carie Sherman

I’m feeling the stress of the holidays. I bet you are too. Personally, I’ve taken on too much work. And I’m using a crazy amount of energy reigning in my inner Clark W. Griswold. But I’ll be fine, and it’s for one reason: I am the proud carrier of the Lupus Card. And I use it anytime I’m about to:

  • Add to my list of “Must Do’s”
  • Beat myself up about an unrealistic expectation
  • Let myself feel guilty about this failure or that misgiving
  • Throw myself a raging pity party

Warning: The Lupus Card is not prestigious. Membership is not recommended. It offers no cash back or bonus miles. But it’s given me something money can’t buy: Much-needed perspective. You can borrow my card anytime by using this handy mnemonic to evaluate your circumstances. Try it and you’re bound to feel better physically—and emotionally.
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Colorado’s Anti “Puffing” Law Impacts People Living with Chronic Pain (And Other Thoughts I Should Be Forgiven For)

Carie ShermanBy Carie Sherman

Holy change in weather, batman!

I’ve been hurting so badly and had no idea why, until my mom reminded me that Grandpa Harold always said he knew when the weather was changing because he felt it in his bones.

And then there’s my BFF, who doesn’t have an autoimmune condition yet complains of pain and weakness in her bum knee. Poor girl. Her bum knee is the result of having an airhead for a “spotter” who let her fall and tear her ACL during cheerleading practice. In my defense, I had a Tootsie Pop in my hand. Who knows what might have happened if I’d been a good spotter? Maybe she’d have had to cut a lollipop out of her hair? Or suffered a puncture wound from that cardboard-stick thingy?

Another friend posted on Facebook about her Raynaud’s and not being able to feel her toes. And yesterday I met a woman I just met who was having trouble picking something up.

“My hands aren’t working,” she said. Mine weren’t either.
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