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Lupus Foundation Of Colorado Inc

We provide emergency funding for medical, dental, transportation, food and utilities. Our Stanford evidence-based education program encourages self-management, accountability, and healthy living, giving control back to the patient. More than 30,000 individuals in Colorado are diagnosed Lupus.

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Living Well with Lupus Self-Management Classes

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled, General or Disability unspecified
Ethnic/Racial Minorities -- General
Females
Poor/Economically Disadvantaged
People/Families of People with Health Conditions

Description

What is it?
Living Well with Lupus is an evidence-based prevention and health promotion program that addresses common issues faced by people with chronic conditions. Developed by Stanford University, this program includes six weekly classes that offer information on appropriate exercise, healthful eating and medication usage as well as improving communication with your doctor, friends and family. Classes are two and one half hours a week and will be held in the Centennial Lupus Colorado office or in other community settings around the State and are taught by two Stanford-certified trainers. The curriculum program has been rigorously reviewed through more than 20 years of development and data collection supported by grants from the National institutes of Health, the Agency for Healthcare Research and Quality and the Center for Disease Control and Prevention.

What are the benefits?
There is strong evidence from peer-reviewed publications and program evaluations that participation in this support workshop can improve physical, emotional and psychosocial outcomes and quality of life for people with chronic health conditions such as Lupus. Benefits can include:
• Decreased pain and health distress
• Increased energy and less fatigue
• Increased physical activity
• Decreased depression
• Better communication with physicians
• Decreased social role limitations
• Increased confidence in managing your disease

Who Should Attend?
Living Well with Lupus is for adults with lupus or other chronic health conditions and their caregivers. The program may be particularly beneficial for people who have more than one health condition, whose health problems have begun to interfere with their valued life activities, or who have had difficulty following medical health recommendations. The classes are offered at no cost to the participant.

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Evidence of Program's Success

In the past 30+ years, Stanford University's Patient Education Research Center has developed, tested, and evaluated this self-management program for people with lupus and other chronic health conditions. The Stanford Chronic Disease Self-Management Programs have undergone extensive evaluation and been proven effective across socioeconomic and education levels. Health benefits continue over a two-year period even when disability worsens, and there are demonstrated health care cost savings associated with these programs.

Subjects who took the Program, when compared to those who did not, demonstrated significant improvements in exercise, cognitive symptom management, communication with physicians, self-reported general health, health distress, fatigue, disability, and social/role activities limitations. They also spent fewer days in the hospital, and there was also a trend toward fewer outpatients' visits and hospitalizations. These data yield a cost to savings ratio of approximately 1:4. Many of these results persist for as long as three years.

Support Networks

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled, General or Disability unspecified
Ethnic/Racial Minorities -- General
Families
Females
Young Adults (20-25 years)

Description

Three support groups in Colorado serve lupus patients and their families statewide, offering information, support and social interaction. A comprehensive web site at www.lupuscolorado.org and an interactive Facebook page add to our efforts to provide support in convenient ways. We also maintain a list of trained volunteers who provide one-on-one support for caregivers and individuals with lupus.

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Evidence of Program's Success

We currently have 3 support groups that meet regularly in the Denver metro and Colorado Springs area. Groups have been organized at various times in Evergreen, Estes Park, Grand Junction,Longmont and Pueblo. Additionally, trained facilitators are available for phone support.

Emergency Assistance

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled, General or Disability unspecified
Ethnic/Racial Minorities -- General
Families
Females
Poor/Economically Disadvantaged/Indigent

Description

We strive to assist those with lupus who find themselves in a situation that requires short-term resources beyond their means. Emergency Assistance funds are designed to fill a gap, they are not a source of ongoing support for individuals. Funds may be used for utilities, prescription medications, transportation, doctors visits, tests, and medical equipment (glasses, walker etc). There is an application process and the application is available by contacting the office. Applications are reviewed by the staff and an assistance committee. In general, we supply funding no more than once per applicant each year. Part of our effort is directed toward helping the individual consider the issue beyond the crisis period and helping them secure other resources if needed.

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Evidence of Program's Success

We have provided prescription medications, dental work, glasses, utilities, a special bed, medical tests and office visits, and food. In each case, our funds made a difference in the ability of the client to maintain their health, maintain employment or to maintain a basic living situation. Emergency assistance grants are available to anyone living in the State of Colorado.

Public Education and Advocacy

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled, General or Disability unspecified
Ethnic/Racial Minorities -- General
Families
Females
Poor/Economically Disadvantaged/Indigent

Description

To fulfill our mission the Foundation strives to provide high quality information about lupus for those diagnosed with the disease, caregivers, family, and employers. To this end, we maintain a Web Site at www.lupuscolorado.org that contains a variety of information and links to important resources. Our enewsletter is distributed with no charge, throughout the state. We participate in Health Fairs and seek opportunities to participate in similar activities with Community Health Charities and the Colorado Department of Health. In an effort to extend our reach, Lupus Colorado is a member of the Chronic Care Coalition, the Partnership to Fight Chronic Disease and a research partner with the Lupus Research Alliance. We support and advocate for patient rights and drug/medical transparency at both the federal and state level, regularly testifying in the Colorado General Assembly and personally speaking with our National Congressional representatives. Our 30+ page Resource Guide details numerous sources of help and support and is available on the website or by contacting our office.

Photos

Evidence of Program's Success

As a direct result of our legislative efforts, Congress recently allocated additional money for Lupus Research and increased NIH funding. We are often invited to participate in the programs sponsored by others or to be part of collaborative activities. For example, we are part of a coalition with the Lupus Clinic at the University of Colorado at Denver and Health Sciences Center. We bring a wide range of contacts and relationships with researchers in the area to this type of activity.

Support for Research

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Disabled, General or Disability unspecified
Ethnic/Racial Minorities -- General
Females
People/Families of People with Health Conditions

Description

Research is the key to finding a cause and a cure for lupus. We are active partners with the Lupus Research Alliance (LRA) in support of major projects. Our partnership with LRA is predicated on the idea that pooling major research dollars at the national level does more than our dollars may do alone. However, we also support local projects which provide us with visibility and build relationships for the future. For example, we funded the work of Dr. Susan Boackle at the University of Colorado at Denver and Health Sciences Center to support her research to identify a gene marker that may trigger lupus.

Photos

Evidence of Program's Success

NIH Funding has increased as a direct result of our constituent legislative call to action through our partnership with the Lupus Research Alliance. Om addition, the Department of Defense has included $5 million specifically for lupus research. We also know that research holds the key to finding a cause, developing a means of prevention and a cure for this very difficult disease. History also tells us that at times when major dollars were infused into research, major strides were made in the treatment of the disease. We want that for lupus.

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