About Us

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The Lupus and Allied Diseases Association, Inc. (LADA) is an all-volunteer national patient advocacy organization dedicated to enhancing quality of life by enlightening and empowering individuals impacted by lupus and allied diseases and other conditions of unmet need to become proactive in their medical care. As a passion-driven charity led by people with lupus and their loved ones, we work to ensure that the patient stakeholder is included as an equal participant in the healthcare, regulatory and public policy arenas and across the research continuum. It is our goal to improve access to care and quality of life by fostering collaboration among stakeholders, promoting unity in the community, and wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and biomedical research initiatives.


Founded in Utica, NY in 1978, our agency is a tax-exempt charitable organization eligible to receive tax-deductible contributions under IRS Code Section 501(c)(3). Our federal tax identification number is 16-1083229 and a copy of our latest Annual Report and IRS Filing may be found through the links at the bottom of this page or obtained upon request from The NYS Attorney General’s Charities Bureau at 120 Broadway, New York, NY 10271. 

                         
The secret to our success is simple, we have HEART! Our organization's volunteers and supporters have tremendous passion and dedication to the lupus and allied diseases cause. None of us are paid for the endless hours we give to this organization, yet we continue to do so out of a desire to make the world a better place. For some of us volunteering fills a void in our lives after lupus ravaged our dreams of being parents or having a career. For others it shows support for our loved ones suffering from this enigmatic disease. No matter what the motivator is all of us here at Lupus and Allied Diseases Association, Inc., continue to move forward with optimism and hope for a brighter tomorrow for all in the lupus and unmet disease community. 

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Mission 

 

The mission of Lupus and Allied Diseases Association, Inc., is to advocate for those affected by lupus and allied diseases through awareness and research program initiatives to improve quality of life.  

 

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Vision 

The vision of the Lupus and Allied Diseases Association, Inc., is to improve access to care and quality of life by wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and biomedical research initiatives that will identify causes, and discover better diagnostics, superior treatments, and cures. As a passion-driven, patient-focused charity led by individuals with lupus and allied diseases and their care partners, we strive to promote patient-centered care, patient-engaged research and empowerment programs to ensure that the patient perspective is included and recognized as an equal stakeholder in the healthcare, regulatory and public policy arenas and across the research continuum.

 

Purposes

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The purposes of the organization are:

• To coordinate and support research and education in the field of lupus and allied diseases with the goal of establishing more effective treatments that are accessible to those suffering from lupus and allied diseases.

 

• To promote the exchange of knowledge about lupus and allied diseases concerning the symptomology, diagnostic methods, treatments, prevention, pathogenesis and cure.

 

• To collaborate with various health organizations such as patient advocacy organizations, professional societies, government entities, and other interested stakeholders in the promotion of lupus and allied diseases program initiatives.

 

• To support biomedical research programs for lupus and allied diseases.

 

• To raise, disburse, and administer funds in order to accomplish the aforementioned purposes.

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History 

 

The Marguerite Curri L.E. Chapter was founded in 1978 by Peter & Dorothy Curri in memory of their daughter, Marguerite who passed away from complications of Systemic Lupus Erythematosus in 1968.  The Chapter received its Charter from The City of Hope in Los Angeles and began with 150 charter members. In June of 1982 the Chapter became affiliated with The Lupus Foundation of America, and amended its name to Lupus Foundation of America, Inc., Marguerite Curri Chapter.

 

Angela "Aya" LoConti became one of the Chapter leaders along with Elizabeth Jones and others in the East Utica community. They were both original charter members and contributed greatly to the chapter in every way. The Chapter Officers received The JC Penney Golden Rule Volunteer Award in 1998 as finalists, and a $1,000 donation to the organization in their honor. The chapter merged with The New York Southern Tier Chapter in March 1999 as a trial merger in order to meet national criteria. The merger was dissolved in March 2001 due to membership dissatisfaction and the revitalized organization began operating out of the Arntsen residence in Verona. In September of 2005 the Board of Directors voted to end its affiliation with the Lupus Foundation of America and amended the name to Lupus Foundation of Mid and Northern New York, Inc., becoming an independent charitable foundation.  

 

In 2013 the Board of Directors voted to become a national organization and amend the name to Lupus and Allied Diseases Association, Inc., to broaden the organization's focus to include other diseases of unmet need and redefined its purposes to more clearly reflect its strengths as an advocacy and research supportive entity. Research funding is presently given to The Lupus Foundation of America in Washington, DC for both pediatric lupus and mesenchymal stromal cell research, the Lupus Research Alliance in New York, NY for innovative lupus research, the Rheumatology Research Foundation in Atlanta, Ga to support The Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund Preceptorship Program, and the Masonic Medical Research Institute in Utica, NY for lupus research.

LADA 2020-2021 IRS Filing

Independent Accountant's Review 2020-2021

LADA 2019-2020 IRS Filing

LADA Conflict of Interest and Whistleblower Policies

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