Lupus Foundation of Southern Arizona, Inc.

4602 E. Grant Road 85712 Phone: 520 622-9006 Fax: 520-798-0972 E-mail: lupus12@juno.com

2012            ANNUAL                 REPORT 

                 Lupus Foundation of Southern Arizona, Inc.           2012 Board Roster                Board Meetings & Attendance   Board Officers:  President    Joni Broussard, Personal Trust Administration, Northern Trust Bank Vice‐President    Patty Powell, Occupational Therapist, Amphi School District Treasurer    Lindsey Watson, Investment Advisor, Ameriprise Financial Services Secretary    Julie Gates, Public School Teacher, Amphi School District   Board Members:  Dr. Miranda Adelman, Research Assistant Professor, Arizona Arthritis Center Jack Dufficy, Retired Police Dept  Donna Kidder, Registered Nurse Jill Schneden, Registered Nurse, U of A Ricardo Hinds, Project Manager, Molex Inc. Ray Flores, General Manager, El Charro’s Carlotta Flores, Owner   Board Meetings:  Fiscal Planning Meeting – September 21, 2012 In attendance, Joni Broussard, Patty Powell, Julie Gates, Lindsey Ezell, Jill Schneden, Ricardo Hinds  May 15, 2012 – In attendance, Joni Broussard, patty Powell, Julie Gates, Lindsey Ezell, Jill Schneden, Jack Dufficy  March 13, 2012 – In attendance, Joni Broussard, Patty Powell, Julie Gates, Lindsey Watson, Jill Schneden, Jack Dufficy  February 13, 2012 – In attendance, Joni Broussard, Patty Powell, Julie Gates, Jill Schneden, Jack Dufficy, Miranda Adelman, Donna Kidder  January 17, 2012 – In attendance Joni Broussard, Patty Powell, Julie Gates, Lindsey Watson, Jill Schneden, Jack Dufficy, Miranda Adelman  December 20, 2011 – In attendance Joni Broussard, Patty Powell, Julie Gates, Lindsey Watson, Jill Schneden, Jack Dufficy  November 15, 2011 – Joni Broussard, Patty Powell, Julie Gates, Lindsey Watson, Jill Schneden  October 18, 2011 – Joni Broussard, Patty Powell, Jack Dufficy, Julie Gates, Miranda Adelman 

Lupus Lupus is an unpredictable and life‐threatening disease that develops when the body’s immune system is out of balance, causing it to become destructive to any organ system or tissue in the body.  To date lupus has no known cause or cure.   It can affect people of different races, ethnicities and ages, both men and women.  Lupus is difficult to diagnose because its symptoms come and go and mimic those of other diseases.  There is no single laboratory test that can definitively prove that a person has this complex illness.    Lupus is a disease that can affect many parts of the body.  One person with lupus may have swollen knees and fever.  Another person may be tired all the time or have kidney trouble.  Someone else may have rashes.  Lupus can involve the joints, the skin, the kidneys, the lungs, the heart and/or the brain.  Since lupus is highly individualized, and no two cases are exactly alike, the treatment also varies depending on the symptoms and needs of the patient.  Lupus is usually treated by a rheumatologist who specializes in treating diseases that affect the joints and muscles.  According to the Center for Disease Control, lupus is three times more common in black women than in white women.  It is also more common in women of Hispanic/Latina, Asian and American Indian descent.  Hispanic/Latina and Black women tend to develop symptoms at an earlier age than other women.  According to the Lupus Research Institute, the economic impact of lupus based on several studies suggest that the average annual cost to provide medical treatment for a person with lupus is nearly $60,000.  How‐ever, for some lupus patients, medical costs may exceed several thousand dollars every month.   One public biotechnology company developing therapeutics for antibody‐mediated autoimmune diseases indicates that systemic lupus accounts for more than 77,000 hospital admissions in the U.S. each year, averaging 10 days.  In 2008 kidney dialysis, required by some lupus patients, costs more than $6,000 per patient per year in the U.S.  Hip replacement surgery, which may be required as a result of the side effects of high‐dose corticoster‐oid therapy in lupus, costs about $62,000.  To address the multi‐dimensional needs of people with lupus physicians and primary health professionals need to be able to recognize the disease early; the public needs to be better educated about symptoms and treatment; and funding needs to be directed for medical research on lupus.     

Lupus Foundation of Southern Arizona, Inc.

The purpose of the Foundation is to:  

∙  Provide information, education and referral to those affected by lupus  ∙  Promote the development and enhancement of health and social welfare services 

at the local level to assist individuals suffering from lupus  

∙  Promote public education to increase knowledge and understanding of the disease and its ramifications 

 ∙  Encourage support of research programs related to the diagnosis, treatment, cure 

and prevention of lupus     

∙  Promote the exchange of information among  health professionals and collaborate with the professional community to  improve the standards of diagnosis, care and treatment of those affected by lupus   

 

Our Mission Statement 

HUMAN HEALTH AND WELFARE SERVICES PROVIDED BY THE 

LUPUS FOUNDATION OF SOUTHERN ARIZONA, INC.          

 COUNTIES  SERVED: 

 

            Cochise     Graham     Pima 

    Pinal                   Santa Cruz                               

                                       PUBLIC AWARENESS & INFORMATION  During 2012 the Lupus Foundation presented onsite Health Fair and   Education Tables throughout the city including the University of Arizona Arthritis Center, Kino Veterans   Memorial Center, the  Publics Works Building, Price Service Center Amphitheatre, and the Saddlebrook Community.  Lupus Newsletters were sent to 15 hospitals, 38 public libraries, 100 physicians, 33 clinics, 26 public schools and 14 social service agencies throughout Tucson and surrounding   communities.  Apple Annie’s Orchard in Wilcox promoted the Lupus Foundation as one of the charities receiving a portion of its spring through fall harvest proceeds in the summer, spring and fall Newsletters.  Ann Burke representing Silpada promoted lupus awareness during the sale of their jewelry and donated portion of proceeds to the Lupus Foundation  The 2012 Annual Lupus Walkathon held at Reid Park provided lupus   education and        research  information at the site to participants from local businesses, schools and lupus patients and families.  This event was promoted  by many businesses and radio stations as noted on this page.  Members and mailing list to hospitals, libraries and schools notified of guest speaker from         Glaxo‐Smith‐Kline for new drug, Benlysta..  Provided phone and mail support for lupus patients in northern Arizona after the LFA closed their chapter. 

PATIENT EDUCATION & SUPPORT The Lupus Annual Meeting Luncheon has continued to host guest speakers who provide information on lupus research, alternative lupus treatments, and Arizona assistance programs for lupus patients and their families. During this fiscal year, 18 patient Support Groups were held including 10 in the Douglas, Arizona area. Support Facilitator Helen Butler, RN arranged for groups to get information from hand therapists, relaxation therapists and representatives from the new drug Benlysta, during fiscal year 2011. The SLESH Course and two lupus bi-lingual Support Groups were made available during spring & summer. These support and education groups covered topics such as coping with stress, medication problems, doctor-patient issues and adjusting to home and work schedules. 173 lupus inquiries were made during the year and 212 lupus information packets were mailed, including additional packets for family and friends. There were 7 referrals to physicians and 15 after-hour calls during this fiscal year. In our effort to provide care and assistance to lupus patients, approximately 3,006 hours of time was donated by over 71 volunteers and our volunteer Board, in program services, fundraising, health fairs, mailings and the after-hours phone line. 19 lupus patients were provided with referrals to agencies able to provide financial and housing assistance. The Lupus website www.lupus-az.org provided basic lupus information, a current list of the Foundation’s resources and an ongoing lupus calendar of events for the community.

The Foundation produced and

distributed _âÑâá axãá to 300 lupus patients each quarter of 2012 to make lupus patients and their families aware of current research, new medications and any opportunities to participate in clinical drug trials.

Lupus Research at the Arizona Arthritis Center

T he Lupus Foundation of Southern Arizona has continued its support of research by Dr. Miranda K. Adelman at the Arizona Arthritis Center. During fiscal year 2012 the

Foundation contribute 2,550.00 to this research. Dr. Adelman is researching the role of retroviruses in autoimmune disease, particularly systemic lupus erythematosus and rheumatoid arthritis. Study results will have important implications for the development of treatments that block the causes of autoimmune diseases. Dr. Adelman’s groundbreaking work at the Arizona Arthritis Center is focused on the role of human endogenous retroviruses in autoimmune disease. To understand the role endogenous retroviruses have in autoimmune disease, Dr. Adelman is studying the tissue and blood of patients with systemic lupus.

For more information Dr. Adelman can be reached at: mka@u.arizona.edu

The cause of complex autoimmune diseases such as systemic lupus erythematosus is not fully understood; however, there is now considerable circumstantial evidence that the development of autoimmune diseases is dependent on a combination of environmental genetic and retroviral factors.

Expenses Program Services 40,071.00 Fundraising 1,881.00 Management & General Expense 3,803.00 2012 LUPUS FOUNDATION OF SOUTHERN ARIZONA, INC. ANNUAL REPORT

Fiscal Year Ending September 30, 2012

Income $40, 124.00