Lupus Research Alliance LuCIN Clinical Trials Network Launches Inaugural Studies

The Lupus Research Alliance has announced their first five clinical trials being conducted through their Lupus Clinical Investigators Network (LuCIN). LuCIN was founded, and is managed and funded by the Lupus Research Alliance to facilitate the development of new lupus treatments.

Two of the five clinical trials are being conducted in Colorado.  One is currently recruiting for participants, which could be a great opportunity for local Colorado lupus patients.  Please click on the links below to be directed to the website for each clinical trial, which will provide the purpose of the study, eligibility, and contact information if you are interested in participating.

LuCIN Clinical Trials being conducted in Colorado:

  1. In collaboration with AMPEL BioSolutions and ImageAnalysis, the Dynamic Imaging to Assess Variation in Lupus Nephritis (DIVINE)study tests the potential for sophisticated MRI technology to assess lupus nephritis.
  2. The Lupus Research Alliance is collaborating with Celgene Corporation to study an oral drug CC-220as a potential treatment for SLE.

Additional LuCIN Clinical Trials:

  1. In partnership with Pfizer, the study VAlidation in LUpus of an Electronic Patient Reported Outcomes Tool (VALUE)is testing a smartphone app enabling lupus patients to report on symptoms in real time.
  2. In conjunction with Horizon Pharma Rayos Inhibits Fatigue in Lupus Erythematosus (RIFLE) will test the company’s prednisone RAYOS® on severe fatigue and morning stiffness.
  3. The Lupus Research Alliance in partnership with Merck/EMD Serono is collaborating to evaluate M2951, a novel inhibitor of Bruton’s Tyrosine Kinase (BTK) in lupus.

Lupus Colorado is a proud Research and Advocacy Partner of Lupus Research Alliance. 

For more information about these studies, please refer to the Frequently Asked Questions or contact Lupus Research Alliance at 646-884-6074.

 



Just Around the Corner

By Guest Blogger Sandra Kanowitz

Yes, they are coming-the holidays.  I always greet this time of year with a mixture of delight and dread. I love the fall season, with the cooler temperatures and glorious color. I have put my garden to bed and now have more time available. My nesting instincts have kicked in along with a more robust appetite, unfortunate for my waistline and half of the clothes in my closet. I am already fretting about who will do Thanksgiving, and will it fall on my shoulders. I love the holidays, but find myself increasingly unable to meet the many demands they present. Giving up old traditions, like setting the perfect table, having the house decorated and spotless, and greeting everyone with a smile and serenity is so hard for me. So I must make a game plan to survive the merriment and chaos that will soon ensue. Please borrow some of these ideas to bring more joy and less angst to your holiday season:

  • Start now planning your activities. Make a categorized task list, such as house preparation/decoration, meal prep, gift giving, social events, and family activities. List a task a day in logical order on your calendar so the work is spread out and more manageable.
  • Consider and discuss with others ways you can simplify, scale back, change-up, and rethink how you do the holidays. Less can be just as beautiful, more elegant, less cluttered, and relief from the sensory overload an “over the top” holiday can present.
  • Set the mood with lighting (fireplace, candles), music, seasonal scents and colors, and fewer decorations for which you must search, unbox, set up, dust, and later put away.
  • Use technology to your advantage. Order groceries online (check out King Soopers’ Clicklist service) or have them delivered (Amazon Prime, Whole Foods, Door-to-Door)*. Shop online for gifts and party supplies. Have packages picked up by ordering online at USPS.com, UPS.com)*. Put your to-do list and set reminders on your smart phone. Put household lights on timers. Send holiday e-cards, many of which are free online.
  • Take turns with someone shopping and sharing large quantity items from warehouse stores.
  • Try new conveniences like partially prepared meals from local businesses or delivered meal kits (Hello Fresh, Blue Apron, Sun Basket)*. Order in from restaurants that deliver. Eat all those goodies you have stashed away in your freezer instead of cooking.
  • Give to the less fortunate and donate items, volunteer at a food bank, hospital or soup kitchen. This will keep your mind off your own aches and pains, and alter your perspective of “unlucky”.
  • Nurture yourself by eating well, resting when needed, getting a massage, treating yourself in whatever way helps relieve stress.
  • Just say “no” if demands get out of control. You can politely decline requests by saying “Oh, I wish I could, but my health puts limitations on my energy and activities.”

First and foremost, focus on the true meaning of the holiday and less on the commercial aspects. Lastly, savor the beauty, love, traditions, music, camaraderie and joy of the season, and revel in the time you spend with family and friends.  


2017 Lupus Colorado Community Walk Success

My name is Linda Garrett and I am on the Lupus Colorado Board of Directors, I was the 2017 Walk Chair and I am a Lupus warrior, a Lupus advocate and a Walk participant.

I wore many hats for the 2017 Lupus Colorado Community Walk. My favorite, of course, was my sparkly Walk Queen tiara. The Walk was so much fun this year – and such a great success. Over 250 Lupus Colorado supporters gathered at Prospect Park on September 16, 2017.  It was a beautiful afternoon for greeting old friends and making new ones, for awareness and advocacy, and for raising valuable funds for Colorado lupus patients.

The Walk was designed to fit the needs and challenges of Lupus patients. As a warrior and participant, I so appreciated the thoughtfulness that went into the planning and execution of this event.

Festivities began at 4:00 p.m. — lupus patients just aren’t at our best early in the morning and we struggle with the Colorado sun at midday. Jay’s Valet graciously provided pedicabs to transport Walk participants from the farthest parking lot – a distance that could have been challenging – to the event. The Wellness Village, new this year, featured 12 vendors and exhibitors who offered products, services and information specifically targeted to patients, caregivers, families, friends and other supporters. Four food trucks provided yummy snacks and water stations everywhere made it easy to meet two of lupus’s primary challenges – eat when you’re hungry and always, always, always stay hydrated.

The pre-Walk games and activities were so important in making this a fun Community event. Seeing the kids with their faces painted and cotton candy in their little hands – oh my, so precious! My Mom, who traveled from Wisconsin for the Walk, loves watching kids blow bubbles and reported seeing the biggest bubble EVER! We saw some fierce competition with the adult games – all in good fun. Our favorite DJ Jeff, who volunteered his services for the second year in a row, provided the soundtrack for the fun. Who else loves classic rock?

The 0.5 mile Walk path featured a beautiful, shady route through the park and had a 0.25 mile shortcut for those warriors and supporters who just weren’t up to a half mile that afternoon. My amazing team, Team L4 – Linda’s Loves Loathe Lupus, all completed the longer route and enjoyed great conversation and camaraderie as we meandered around the park. It seemed everyone was enjoying the afternoon.

While the main focus of the Walk is awareness and advocacy for our warriors, it is also the primary fundraising event to fund Lupus Colorado’s emergency financial assistance fund, which provides Help for Today for lupus patients in Colorado. We set a lofty goal of $45,000 and are currently at an amazing $43,000.  $8,800 of that total was raised through sponsorships from Kramer & Jensen, Dick and Mary Johnson, Rare Patient Voice, Frank and Mary Barry and Jay’s Valet. The rest of those dollars were raised by the 26 teams that participated – 12 teams raised over $500 and the top team has raised $7685 so far!  We are so proud that all of the dollars raised will stay in Colorado to help local patients with medical bills, prescriptions co-pays, emergency groceries, heat to stay warm this winter. There is still time to donate to help us raise that last $2000. You can make a donation until October 31.

So the 2017 Community Walk is now a memory – a good one, at that! We’re already looking forward to the 2018 Walk – stay tuned for details. Let’s make it another grand Saturday in the park!