The Lupus and Allied Diseases Association, Inc. is an all-volunteer national non-profit organization dedicated to 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 programs. As a passion-driven, patient-centered organization led by individuals with lupus and their loved ones, it is our goal to improve access to care and quality of life by supporting initiatives that will lead to the discovery of better diagnostics, superior treatments, causes and cures. 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.
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 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.
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 due to their recent adoption of new national affiliation criteria 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 an advocacy and research supportive entity. Research funding is presently given to The Lupus Research Alliance in New York 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
Dale R. Bullock
Richard D. Deyulio
Lisabeth S. Iglesias
Jane M. Porter
Megan K. Vanderbur
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
Lupus and Allied Diseases Association, Inc. is proud to be affiliated with:
Lupus Agencies of New York State
National Coalition of Autoimmune Patient Groups (NCAPG)
The NIAMS Lupus Federal Working Group
Patients for Biologics Safety & Access (PBSA)
New York Biotechnology Association (NY BIO)
Alliance for Safe Biologic Medicines (ASBM)
Coalition for Accessible Treatments (CAT)
Healthcare Leaders for Accountable Innovation in Medicare
PBM Transparency Coalition
Coalition for Clinical Trials Awareness (CCTA)
Friends of the NIDCR Patient Advocacy Council
Biosimilar Policy Workshop Steering Committee
Non-Medical Switching Coalition
New Yorkers for Affordable Health Coverage (NYFAHC)
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