Lupus Awareness Month 2018

Kaleidoscope Fighting Lupus

May is National Lupus Awareness Month – a time for Kaleidoscope Fighting Lupus and partnering organizations across the country to highlight the disease. May 10th is World Lupus Day bringing global awareness to this disease.  Lupus is a global health problem affecting millions of people of all nationalities, races, ethnicities, genders and ages. 

While lupus knows no boundaries, knowing all you can about lupus can make a positive change in the lives of everyone impacted by disease.  Here is what we are doing to raise this awareness.  Check out our website for other events as they are scheduled!

Lupus Awareness Month Events

All Month:        Windows at The Nines Hotel and “The Girl with Kaleidoscope Eyes

(Portland, Ore.)

May 4th:          Light it Up Purple (Seattle, Wash.)

May 10th:        World Lupus Day and Lighting of the Morrison Bridge (Portland, Ore.)

May 12th          Riders 4 A Cure (Poulsbo, Wash.) 

May 18th:        Wine with Us  (Sold Out)

May 19th:        BurnCycle’s “Awareness Rides (Lake Oswego, Ore.)

May 20th:        BurnCycle’s “The Lab” Studio Fundraiser (Portland, Ore.)

Windows at The Nines Hotel

The Nine’s Hotel has graciously gifted Kaleidoscope Fighting Lupus with its street-level window for the full month of May. This high-visibility, downtown Portland exposure gives us the opportunity to raise much needed awareness for lupus and those living with it.  You can enjoy the window, artwork, and valuable information beginning May 1, 2018 at The Nine’s Hotel, 525 SW Morrison Street,  Portland, Oregon 97204.

“The Girl with Kaleidoscope Eyes”

The inspiration for the central work of art in the window at The Nine’s Hotel, is connected with both the name of our organization, “Kaleidoscope,” and the disease of lupus itself.  In 1967, when John Lennon was working on The Beatle’s album, “Sgt. Peppers Lonely Heart’s Club Band,” his son, Julian, 4 years old at the time, drew a picture of his friend and classmate, Lucy O’Donnell (later Lucy Vodden) and called the drawing, “Lucy in the sky with diamonds.”  John took this inspiration for the song, added the phrase, “the girl with kaleidoscope eyes,” and the rest is history.  Lucy O’Donnell was diagnosed with lupus and died from the disease in 2009.  We hope to honor her memory as we raise awareness for the disease that took her life.

Dennis Cunningham was commissioned to create this work of art for Lupus Awareness Month by Kaleidoscope Fighting Lupus.  Dennis is an acclaimed artist from Portland, Oregon USA. His graphic mediums of choice, for three decades, have been block-print and pastel. He has been a strong advocate for the arts and for those living with lupus.

World Lupus Day – May 10th

This year, we will raise awareness of lupus to a more global community by partnering with Lupus UK on World Lupus Day.  Kaleidoscope Fighting Lupus and Lupus UK would like you to help with this awareness campaign. Please share your experiences of the first time you heard about lupus by completing the following:

  • Share a high resolution photo or image
  • Tell us your story
  • Share using the hashtags #WorldLupusDay and #LupusAwareness
  • Please share your story with us so we can raise awareness by sharing it with our supporters through our social media channels (Facebook, Twitter, & Instagram ).

Light It Up Purple

On May 4th, Kaleidoscope Fighting Lupus, Lupus Research Alliance and Sisters Against Lupus invite you to join us in Seattle, at Pier 57, for the annual Light IT Up Purple rally. It is an evening of raising awareness, community building and fun. 

Lighting of the Morrison Bridge

For years, Kaleidoscope Fighting Lupus has worked in partnership with the Willamette Light Brigade to bring awareness to those living with lupus. On Thursday, May 10th, the Morrison Bridge in Portland, Oregon will shimmer in radiant teal and purple to reflect Lupus Awareness Month in May and World Lupus Day. Teal is the official color of Kaleidoscope Fighting Lupus, and the bridge lighting honors those living with lupus.

BurnCycle’s Lupus Awareness Rides

On Saturday, May 19th, Burncycle in Lake Oswego, will host two lupus “awareness rides,” one at 9 am and the other at 10 am.  At this event, members will be able to learn more about the disease and Kaleidoscope Fighting Lupus and have the opportunity to raise some funds as they push themselves to better health.

BurnCycle’s “The Lab” Studio Fundraiser

On Sunday, May 20th BurnCycle’s “The Lab” in east Portland will be hosting an “All Things Autoimmune” event focusing on lupus and other autoimmune diseases.  This will be a great time of awareness and fundraising.

Wine With Us

On Friday, May 18th, join us for an evening of exploring Oregon-only, small-barrel wines with expert guides at Cellar 503.  This event will be hosted by the Staff and Board of Kaleidoscope Fighting Lupus and seating is limited. Contact us at [email protected] to RSVP.

How you can help all month long ….

There are countless ways to become involved to help Kaleidoscope Fighting Lupus, not just for Lupus Awareness Month, but all year long! 

  • Share it, Like it, Retweet it: Share our events, posts and new memes on all of our Kaleidoscope Fighting Lupus social media platforms. Retweet using the hashtags #WorldLupusDay and #LupusAwareness.  Help us to spread the word about lupus and to ensure that no one has to face this disease alone. The more you share; the more you care; the more people are aware!
  • Host your own event: Many supporters have come up with creative ways to raise awareness and even funds for our lupus programs by hosting events in their homes and communities. 
  • Donate: Your generous donation is tax deductible and makes a difference for people living with lupus.
  • Volunteer: We need your help! Kaleidoscope Fighting Lupus has many opportunities to get involved in the fight against lupus. Please join us!
  • Sponsor: Help make a difference for those living with lupus through sponsorship of our programs or events.

What is Lupus?

Lupus is a widespread and chronic autoimmune disease that causes the immune system to attack the body’s own tissue and organs, by mistake. It can affect any part of the body, often in unpredictable in life-changing ways.  Lupus can range from mild to life-threatening and  should be treated by a healthcare professional.  This can be a challenge as lupus is difficult to diagnose.

Even in 2018, lupus is widely misunderstood and though the numbers are still unknown, it is believed that it affects millions of people world-wide. Each year more than 16,000 Americans are diagnosed with lupus.  It strikes people of all races and ethnic groups, though it affects more women than men, and approximately two-thirds of those with lupus are people of color.  Most people with lupus are first diagnosed between the ages of 15 to 44 years.

To learn more about lupus

 

Kaleidoscope Fighting Lupus’ Mission

Our mission is to EDUCATE the public and to INFORM the medical community about lupus, to ADVOCATE for earlier life-saving diagnosis, to SUPPORT people living with lupus and to COLLABORATE with government and foundations to fund research toward a cure.

Our Focus:

We aim to transform lupus into a widely recognized and treatable disease.  We do this by conducting major awareness campaigns about lupus and its overlap diseases.  Additionally, our focus is to attract political, public and individual support in the form of more research, and resource dollars, to aid in the fight against lupus and to advance services and programs for those living with lupus. 

Our Community:

We want those living with lupus to know that they are not alone.  Our programs, outreach, education, marketing and advocacy strategies are designed to assist people in Oregon and beyond,  to seek and receive earlier diagnosis and treatment. We strive to provide the lupus community with medical resources, financial assistance and emotional support. It is our desire to see the mortality rate for this disease decrease, the quality of life of those living with it increase, and to ultimately find a cure.

Our Actions:

Kaleidoscope Fighting Lupus dedicates the majority of our fundraising to programs and outreach.  Social media is our primary means of outreach. We reach hundreds of thousands of people daily, through our bi-weekly live Facebook support group chats, our award-winning lupus blogs, lupus-related informational graphics, and articles.  Our strong social media and web presence gives us a unique opportunity to see and hear first hand the crucial needs of those living with lupus. 

  • On-Ground Support Groups: Our local support groups allow those with lupus (and their support systems) an opportunity to share and learn from each others’ experiences and connect face-to-face in a warm and welcoming environment. 
  • Online Support Groups: Our online support group offers those without access to a local support group the ability to connect and chat live with others. These Live Facebook chats are viewed by thousands of people from all around the globe bi-weekly. 
  • Resource Network: Our website, which receives typically 100,000 organic hits each month, is a resource that provides information about symptoms, treatment and other disease components through award-winning blogs and articles. It also provides local and national resources for legal, financial, medical and lifestyle information. 
  • Emergency Client Assistance: We have developed a program to provide direct emergency financial assistance in the form of mini-grants and long-term empowering solutions for those living with lupus in Oregon and Southwest Washington.
  • Advocacy and Awareness Platforms: Using social media, advertising and grassroots efforts, we are working to raise awareness for lupus. Our goal is to increase research and funding for earlier life-saving diagnosis and finding a cure.

 Our Ultimate Goal:

Out goal is to seek a cure for all forms of lupus.   We hope for a day when no one has to live with this illness.   Until then, we will fight on.  Join us in that fight!

Learn more about us at…

*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.

 

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