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!
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.
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.
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.
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.
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
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
Samantha C. Darwak
Lisabeth S. Iglesias
Nancy H. Hopkins
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
Lupus and Allied Diseases Association, Inc., is proud to be affiliated with:
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
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)
Partnership for Part D Access
Alliance for Stronger FDA
Collaborating for Cures Coalition
Partnership to Protect Patient Health
I Am Essential Coalition
Value Our Health Coalition
Vision Health Advocacy Coalition
New Yorkers for Affordable Health Coverage (NYFAHC)
Lupus Agencies of New York State (LANYS)
New York Biotechnology Association (NY BIO)
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