As a patient-led organization, we strive to ensure that the patient voice and perspective are valued and included in advocacy, awareness, and research initiatives!

About Us

The Lupus and Allied Diseases Association, Inc., is an all-volunteer national non-profit dedicated to enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet by fostering collaboration among stakeholders, promoting unity in the community, and participating in innovative advocacy, 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. 

 

 

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.  

 

 

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 loved ones, 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

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.

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 national organization, 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. 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 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 stem cell research and to the Lupus Research Alliance in New York, NY for innovative lupus and autoimmune research.

Board of Directors  
 

Officers 
    Kathleen A. Arntsen  -  President & CEO 
    Sandra M. Frear  -  1st Vice President 
    Jacqueline L. Taylor  -  2nd Vice President
    Philip A. Teague  -  Treasurer 
    David L. Arntsen  -  Secretary

Board Members 
    Samantha C. Darwak
    Lisabeth S. Iglesias

    Nancy H. Hopkins
    Estela Mata-Carcamo
    Juana Mata
    Jane M. Porter

   

            
     
Honorary Medical Advisory Board 


    Marwan Al-Haddad, MD  Dermatologist
    Atul Butala, MD  Hematologist 
    Gregory Cummings, MD  Neurologist 
    Victoria Laucello, CSW  Psychotherapist 
    Martin Morell, MD  Rheumatologist 
    Donald Raddatz, MD  Rheumatologist 
    Raquel Rosen, MD  Nephrologist
    Helen Sarandrea, PT  Physical Therapist
    Julia Simard, SCD  Epidemiologist
    

 

Affiliations 

Lupus and Allied Diseases Association, Inc., is proud to be affiliated with: 

        NIAMS Coalition

        International Alliance of Patients' Organizations (IAPO)
        National Coalition of Autoimmune Patient Groups (NCAPG)
        The NIAMS Lupus Federal Working Group
        Alliance for Safe Biologic Medicines (ASBM)
        Coalition for Accessible Treatments (CAT) 
        Alliance for Transparent & Affordable Prescriptions (ATAP)
        Coalition for Clinical Trials Awareness (CCTA)
        Friends of the NIDCR Patient Advocacy Council
        KeepMyRX Coalition
        Patient Protections Coalition
        Coalition for Part B Access for Seniors and Physicians (ASP)
        Healthcare Leaders for Accountable Innovation in Medicare (AIM)
        Protect Medicare Part D Working Group (PMPD)
        MAPRx Coalition
        Partnership for Part D Access
        Alliance for Stronger FDA
        Research!America
        Collaborating for Cures Coalition
        Partnership to Protect Patient Health
        I Am Essential Coalition
        Value Our Health Coalition
        New Yorkers for Affordable Health Coverage (NYFAHC) 
        Lupus Agencies of New York State (LANYS)
        New York Biotechnology Association (NY BIO)
        BioNJ 
        New York State Rheumatology Society (NYSRS)
        Patient Access for Florida 
        FAIRx Floridians for Attainable & Innovative Rx 
        Floridians for Reliable Health Coverage 
        Tennessee Patient Stability Coalition 
        Illinois Fair Care Coalition
        Washington Continuity of Care Coalition
        Texas Coalition for Stable Patients
        Washington Step Therapy Coalition
        Connecticut Non-Medical Switching Coalition
        Massachusetts Non-Medical Switching Coalition
        Pennsylvanians for Fair Health Coverage Coalition
        New Jersey Step Therapy Coalition
        Connecticut Step Therapy Coalition
        California Step Therapy Coalition      

Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY  13478

 

Phone 315-829-4272
Fax 315-829-4272

Toll free 1-866-2-LUPUS-4

e-mail -  Info@LADAinc.org

© 2018 ALL RIGHTS RESERVED, LUPUS AND ALLIED DISEASES ASSOCIATION, INC.