As patient stakeholders ourselves, we amplify the patient voice
and elevate the patient perspective to advance innovative
advocacy, awareness and research initiatives!

About Us

The Lupus and Allied Diseases Association, Inc. is an all-volunteer national non-profit organization dedicated to improving access to care and enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet by fostering collaboration among stakeholders and promoting 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, NY, 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 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
 

It is our vision to improve access to care and quality of life by fostering collaboration among stakeholders and supporting innovative advocacy, education, awareness and biomedical research initiatives that will lead to the discovery of better diagnostics, superior treatments, causes and cures. As a passion-driven, patient-focused charity led by individuals with lupus and allied diseases and their loved ones, we hope that by promoting patient-centered healthcare, patient-engaged research and empowerment programs, we will ensure that the patient perspective is included and recognized as an equal voice in the healthcare and public policy arenas and across the research continuum. 


Purposes

The purposes of the organization include:

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 amend the name to Lupus and Allied Diseases Association, Inc., to broaden the organization's focus to include other diseases of unmet need and restated its purposes to more clearly reflect our strengths as a national advocacy and research supportive entity.

Research funding is presently given to The Lupus Research Alliance in New York for innovative lupus and autoimmune research and to the Lupus Foundation of America in Washington, DC for pediatric lupus and mesenchymal stem cell 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
    Nancy H. Hopkins
    Lisabeth S. Iglesias
    Jane M. Porter
            
Honorary Medical Advisory Board 
    
Atul Butala, MD  Hematologist
    Gregory Cummings, MD  Neurologist
    Victoria Laucello, CSW  Psychotherapist
    Edward B. Lee, MD  Dermatologist
    Martin Morell, MD  Rheumatologist
    Donald Raddatz, MD  Rheumatologist 
    Raquel Rosen, MD  Nephrologist
    Helen Sarandrea, PT  Physical Therapist
    Allan
Smiley, MD  Rheumatologist


Affiliations


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

        
NIAMS Coalition

        National Coalition of Autoimmune Patient Groups (NCAPG)
        
The NIAMS Lupus Federal Working Group
        Alliance for Safe Biologic Medicines (ASBM)
        C
oalition for Accessible Treatments (CAT) 
        Healthcare Leaders for Accountable Innovation in Medicare (AIM)
        Alliance for Transparent & Affordable Prescriptions (ATAP)
        Coalition for Clinical Trials Awareness (CCTA)
        Friends of the NIDCR Patient Advocacy Council
        KeepMyRX Coalition
        Biosimilar Policy Workshop Steering Committee
        Patient Protections Coalition
        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
        Coalition for Part B Access for Seniors and Physicians (ASP) 
        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
         New Jersey Step Therapy Coalition
        Connecticut Step Therapy Coalition
        
       
 

       
                



Contact Us:
Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY 13478
phone 315-829-4272 
(toll free phone) 1-866-258-7874 or 1-866-2-LUPUS-4
fax 315-829-4272
e-mail Info@LADAinc.org