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.

 


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!

 


Lupus Colorado and Antidote Collaborate to Drive Lupus Research Forward

Today, Lupus Colorado is pleased to announce a new partnership with digital health company Antidote to help lupus patients and their loved ones match to clinical trial options quickly and easily. Lupus Colorado will now be offering Antidote’s powerful clinical trial search on its website.

There are currently more than 120 clinical studies in lupus, signifying the potential of new and better lupus treatments – and maybe even a cure someday. But, there’s a problem. These trials need more than 35,000 people to take part. It’s only by increasing the number of patients getting involved in research that lupus treatment options can expand.

This new search tool is powered by Antidote, and it uses natural language processing and artificial intelligence to make it easier than ever for people to find their best clinical trial matches. Patients need only answer a few questions online about their health, and Antidote’s search tool will provide a list of trials for which they are likely a match. People with lupus and healthy volunteers can then get in touch with the researchers conducting any trials of interest through Antidote. And of course, all data is kept entirely confidential.

“Lupus is a disease that has been underrepresented in research to date,” says Sarah Kerruish, Chief Patient Officer at Antidote. “But the tide is shifting, and we’re excited to be working with Lupus Colorado to accelerate research in this area and ultimately provide additional treatment options to those living with lupus.”

Get started searching today by visiting http://lupuscolorado.org/clinical-trials/.


Father’s Day: Men Have Lupus Too

My name is Brian and I have Lupus. When I was diagnosed in 2011, it wasn’t just my life that changed, but the life of my family. I have been happily married for 18 years and am fortunate to have six wonderful children, all BOYS! Being a father with Lupus was challenging at first, mostly because they did not understand what Lupus was. Lupus has changed my daily routine and has made it challenging to keep up with the energetic lifestyle I had with my boys.  I have always been an active part of my kid’s lives, from coaching their sports teams to spending evenings and weekends in the park playing. 

Between my lupus symptoms and the never-ending schedule of doctor appointments, maintaining my pre-lupus lifestyle is a daily struggle.  The silver lining is that there is hope for a better day and better test results. There will always be tough days, but I have learned to appreciate small victories instead of wanting the battle to be won. With the support of my family and the lupus support group, I am able to take each day as it comes and focus on the future.

This year I am hoping to be more active in local lupus events and am looking forward to participating in the 2017 Lupus Colorado Community Walk with the Purple Healers support group. I hope by sharing my story it will encourage more men with lupus to understand that they are not alone.  This Father’s Day, I want all Lupus Warriors to remember that by never giving up, we can have days were we can say, “Lupus I WON TODAY!!!”