Kaleidoscope Fighting Lupus

Educational videos and symposiums: Kaleidoscope Fighting Lupus' (kfl's) most extensive impact and programmatic accomplishments come from our educational videos and virtual symposium productions. In keeping with our mission to "educate the public and inform the medical community about Lupus, and to advocate for earlier life-saving diagnosis," kfl works with community partners, sponsors, patients, clinicians, and scientists to research, produce, promote, and release educational videos on a wide variety of topics that highlight the most important issues and challenges that face those living with Lupus. Kfl symposiums are peer-reviewed, educational videos presented by cliniciansresearchers and industry experts in the medical field specific to Lupus. These videos are produced and released online multiple times throughout the year to a global audience via our website, youtube channel and social media platforms (facebook, twitter and instagram) as well as those of our partners. These symposiums become the basis for discussions in the Lupus communities around the united states and reach a global audience. Producing these videos entails travel, production and post-production videography, graphic design, promotion and release management. Even with continued challenges from the pandemic, we were able to produce and publish eight such videos this past year, allowing us to fulfill this aspect of our mission. Topics included: Lupus fatigue, Lupus nephritis (on a variety of subjects including early diagnosis and treatment); a primer on patient preparation for visiting their doctor/rheumatologist; emotional health management of Lupus and Lupus nephritis; a video highlighting the members/specialists of a Lupus patient's healthcare team; and how to care for the patient's caregivers.each month, hundreds of thousands of people from all over the world visit the kfl website, facebook page, twitter and instagram social media outlets. Our social media includes almost daily updates that provide both information and inspiration to one of the largest online audiences devoted to those living with Lupus. Daily engagements generally reaching tens of thousands. These posts are shared around the world attracting comments and discussions that allow those living with Lupus to find support, information and a shared feeling of community.all educational symposiums and social media content is rigorously vetted by experts and published on a consistent weekly schedule that reaches an increasingly global following. Examples include: "Lupus in the news" announcements, which focus on the latest medical research, information on therapies and drug trials; "stories of hope," which are inspirational posts written by real people living with Lupus - sharing their personal stories with us and their global community, and sending the message to all that they are not alone; "Lupus facts" that provide important information on Lupus in the form of memes that are widely shared long after they have been initially posted; weekly blog articles, written by experts. These provide a deeper exploration of the topics and issues that are critical to those living with Lupus. We also create other social media posts regarding programs and events to further engage the Lupus community, such as each may celebrating Lupus awareness month. Kfl's outreach is one of the largest in the united states, and the blog articles in particular have won numerous awards in recent years, including the designation as the "#1 Lupus blog and website to watch in 2020" by feedspot.com, and one of healthline's "best Lupus blogs for 2020." Kfl also maintains a large archive of past blogs and articles (currently over 200 and growing) and regularly update their content with experts in the field.our online and virtual educational outreach has been particularly important during this time of global pandemic and social distancing restrictions. This is especially important for those living with Lupus and compromised immune systems.

Local support, outreach and emergency client assistance: we believe that no one should fight Lupus alone, and to fulfill this aspect of our mission, we provide Lupus support group meetings, outreach and an emergency client assistance program. Kfl hosts monthly Lupus support group meetings. These support groups take place in-person, via online or both in a hybrid form. Attendees include those from Oregon and southwestern Washington, and outside the region using the online format. These support groups provide the safe space necessary for the emotional, physical, and social needs of those living with Lupus, as well as their caregivers. These meetings also provide for community-building and for the exchange of ideas, experiences, and wisdom for those new to their Lupus condition and those who have lived with Lupus for much of their lives. These support groups attract those who are new to the area as well as those who have been part of our local Lupus community for years. At these meetings, we welcome those who are still unsure of their Lupus diagnosis as well as those who have been diagnosed with the many overlapping diseases that are often associated with Lupus and autoimmunity issues, such as raynaud's syndrome, fibromyalgia, sjogren's syndrome and others.kaleidoscope Fighting Lupus also provides support to those with Lupus whose medical condition puts them in financial distress through our emergency client assistance program (ecap). This assistance is in the form of one-time, mini-grants and is limited to $500/person/year - unless there are extraordinary circumstances. These funds can be applied to rent, utility bills, groceries, pharmaceuticals, transportation costs or other emergent needs. Our service area is largely in the portland metropolitan area and surrounding counties, but also extends throughout the state of Oregon and southwestern Washington. Applications to the ecap program can be made by phone, online, by email or in person. We take verification of Lupus diagnosis and financial need very seriously. This program is managed in close partnership with st. vincent de paul portland council in receiving applications, managing client records, verifying need, and distributing funds. This partnership increases the capacity of the ecap program and brings it to a wider audience. Funds are not given to individuals, but rather to the property managers, utilities or businesses that require the payments. This program is managed with the assistance of the st. vincent de paul portland council.

Online and social media outreach: another major program service that fulfills our mission to educate, inform and advocate, comes from our online media presence and educational outreach through our social media platforms. The content of this outreach is heavily based on the latest research in this rapidly changing field of medicine. This requires travel and attendance at Lupus medical conferences, meeting, and interviewing researchers, and ultimately distilling this information for a global audience. This information is particularly important for those living with Lupus who, even post pandemic, are more isolated than ever. We want them to get the latest information on their disease as soon as the medical community does!kfl's online outreach is one for the largest in the united states and it expends to a global audience from europe, africa, australia and to parts of asia. Each month, hundreds of thousands of people from all over the world visit the kfl website, youtube channel, facebook page, twitter and instagram social media outlets. Our social media includes almost daily updates that provide both information and inspiration to one of the largest online audiences devoted to those living with Lupus. Daily engagements generally reaching tens of thousands. These posts are shared around the world attracting comments and discussions that allow those living with Lupus to find support, information and a shared feeling of community.this online content is consistently scheduled and updated almost daily, and includes: kfl blog articles, which are extensively researched, academically rigorous, peer-reviewed articles vetted and written by experts. They are consistently recognized as best in class by leaders in the online community, such as healthline and feedspot.com. Lupus in the news, posts that highlight the latest medical research, information on therapies, drug trials and other news items, which are critically important to the Lupus community. Lupus facts, which include important and practical information that we glean from our own review of the current research. Friday inspirations, which include uplifting and more mainstream content to our audience. Stories of hope, inspirational posts written by real people living with Lupus - sharing their personal stories with us and their global community and sending the message to all that they are not alone.