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. (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 perspective is included as an equal stakeholder 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.
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 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
The purposes of the organization are:
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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.
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To promote the exchange of knowledge about lupus and allied diseases concerning the symptomology, diagnostic methods, treatments, prevention, pathogenesis and cure.
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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.
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To support biomedical research programs for lupus and allied diseases.
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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 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.
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
Lisabeth S. Iglesias
Jane M. Porter
Brian J. Vogel
Lori A. Vogel
Anne M. Zablotowicz
Honorary Medical Advisory Board
Marwan Al-Haddad, MD Dermatologist
Atul Butala, MD Hematologist
Gregory Cummings, MD Neurologist
Victoria Laucello, CSW Psychotherapist
Linett Martirossian, MD Rheumatologist
Martin Morell, MD Rheumatologist
Donald Raddatz, MD Rheumatologist
Raquel Rosen, MD Nephrologist
Helen Sarandrea, PT Physical Therapist
Julia Simard, SCD Epidemiologist
Lindsay Tsopelas, MSN, APRN, FNP-C Nurse Practitioner
Affiliations
Lupus and Allied Diseases Association, Inc., is proud to be affiliated with:
NIAMS Coalition
International Alliance of Patients' Organizations (IAPO)
World Lupus Federation
World Patients Alliance
ALPHA Project
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
Covid Advocacy Exchange
Collaborating for Cures Coalition
Safe Step Act Coalition
Copays Count Coalition
Patient Access Collaborative
Partnership to Protect Patient Health
I Am Essential Coalition
Value Our Health Coalition
Vision Health Advocacy Coalition
Chronic Disease Coalition
Alliance for Gout Awareness
Advocates for Telehealth
Alliance for Comprehensive Testing (ACT) Against COVID
Accumulator State Subgroup
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)
New York Step Therapy Coalition
Patient Access for Florida
FAIRx Floridians for Attainable & Innovative Rx
Texas Coalition for Stable Patients
Pennsylvanians for Fair Health Coverage Coalition
Iowa Continuity of Care Coalition
Massachusetts Step Therapy Coalition
California Step Therapy Coalition
Rhode Island Step Therapy Coalition
Nebraska Step Therapy Coalition
New Jersey Step Therapy Coalition
Patient Access for Louisiana
Patient Access for Mississippi
Kentucky All Co-Pays Count Coalition
Texas Co-Pay Accumulator Coalition
California for Improved Patient Access Coalition
Oklahomans for Patient Access Partners
Oregon All Co-Pays Count Coalition
New Mexico Patient Access
Florida All Co-Pays Count Alliance
Pennsylvania All Co-Pays Count Coalition
Michigan All Co-Pays Count Coalition
Partnership For A Healthy Tennessee
Ohio All Co-Pays Count Coalition
Minnesota All Co-Pays Count Coalition
Maryland All Co-Pays Count Coalition
South Dakota All Co-Pays Count Coalition
Wisconsin All Co-Pays Count Coalition
Patients for Prescription Access Coalition
Connecticut All Co-Pays Count Coalition
Massachusetts All Co-Pays Count Coalition
Rhode Island All Co-Pays Count Coalition
Utah All Co-Pays Count Coalition
Maine All Co-Pays Count Coalition
Washington All Co-Pays Count Coalition
