For the past 40 years, the Lupus and Allied Diseases 
Association, Inc., formerly Lupus Foundation of Mid and 
Northern New York, has been providing education, support, 
and outreach services for people impacted by lupus and
diseases and 
public awareness,
advocacy and research initiatives with the patient voice.

For the Fiscal Year ending on September 30, 2017 
our organization's administrative costs were 
less than 1.0% leaving more than 99.0% of every
raised going directly to our Program Services!
It is our hope that if you have lupus or another allied disease 
or know someone who has lupus or another allied disease 
that you will use this website as a tool to take control and learn 
to live with your condition. We realize that these diseases do not 
just affect an individual; they impact the entire family. We are here 
for you as you and your loved ones continue on your journey. 


News & Events


The Lupus and Allied Diseases Association, the Lupus 
Foundation of America, and the Lupus Research Alliance

collaborated on a Lupus Patient-Focused Drug Development
(PFDD) Initiative holding the
 Lupus: Patient Voices Meeting
on September 25, 2017. This groundbreaking endeavor
culminated in a day-long meeting that featured a series
of facilitated panel and audience 
discussions designed
to provide the Food and Drug Administration (FDA) and
stakeholders with perspectives from people with lupus.

The Lupus: Patient Voices Report, a comprehensive report composed
as a result of the externally-led Lupus Patient-Focused Drug
Development (PFDD) Meeting and pre-meeting survey, was released
on March 6th. More than 2,100 people with lupus and their 
representatives contributed information to this report, sharing 
insights on living with lupus and their experiences with treatments.

This report is a major milestone for the lupus community and
will be shared directly with the U.S. Food and Drug Administration
(FDA) to help advance treatments for lupus. The Lupus: Patient
Report and the Lupus PFDD Meeting are the result of a
collaboration by the three national lupus organizations and 
is a parallel effort to the U.S. Food and Drug Administration’s
(FDA) Patient-Focused Drug Development Initiative. 

      Please visit lupuspfdd.org for more information on the project. 

Post-Report Launch Announcement

Post-Meeting Announcement

September 2017 Press Release

May 2017 Announcement

Lupus PFDD Press Release


LADA joined with the other members of the Lupus 

Agencies of New York State for the 10th Annual Lupus 

Awareness Month Recognition in the State Capitol on
May 23, 2018. Senator Joseph Griffo and Assemblymember
Fred Thiele sponsored the legislative resolutions.
The groups have been coming to Albany each May for
the past ten years to increase public awareness of Lupus
and to garner support for education and research
programs and access to healthcare issues.

The Lupus Agencies of NYS extend sincere appreciation
to our Legislative Resolution Sponsors and our Assembly
and Senate Chamber Hosts and their staff for making 

the event possible and our dedicated lupus advocates.

The 2018 New York State Senate and Assembly
Joint Resolution for Lupus Awareness Month

Assemblymember John McDonald (front far left) and
Fred Thiele (center front) with 
lupus advocates in the NYS 
Assembly Chamber. 

Senator Kevin Parker (center front) and Senator
Kemp Hannon (center back) with lupus
advocates in the NYS Senate Chamber.

Assemblymember Fred Thiele (center) with LADA 
Board Member Samantha Darwak (left) and 
President & CEO Kathleen Arntsen (right).

Senator Kemp Hannon (2nd left) and Senator
Kevin Parker (far right) with lupus advocates
Carly Harrison (left), Kathleen Arntsen (center,
and Monique Gore-Massy (2nd from right).



Lupus and Allied Diseases Association is honored 
to be a member of the World Lupus Federation 
participating in the 15th annual observance
of World Lupus Day on May 10, 2018 along with
200 lupus groups from around the world. 

A global health problem, lupus affects people of all 
nationalities, races, ethnicities, genders and ages. 
While lupus knows no boundaries, knowing all you 
can about lupus can help control its impact.

Click here for more information about the effort
and make sure your sign the petition to make lupus
a priority to the WHO and read the Global Report.

Thank you to our amazing LADA Advocates for procuring 
6 World Lupus Day Proclamations for our inaugural year 
as members of the World Lupus Federation. 

WLD Proclamation from NYS Senator Charles Schumer

WLD Proclamation from Rome, NY Mayor Jacqueline M. Izzo

Rome, NY Mayor Jacqueline M. Izzo (left) presenting their WLD
Proclamation to LADA Board Member Lisabeth Iglesias (right)

WLD Proclamation from Clearwater, FL Mayor George Cretekos

LADA Board Member Jane Porter (left) and Vice President
Sandi Frear (right) receiving the Clearwater, FL WLD
Proclamation from Mayor George Cretekos (center)

WLD Proclamation from Seminole, FL Mayor Leslie Waters

WLD Proclamation from Culver City, CA Mayor Thomas Small

WLD Proclamation from Los Angeles, CA Mayor Eric Garcetti

LADA Patient Advocate Amanda Greene
(better known as LA Lupus Lady) displaying the City
of Los Angeles WLD Proclamation on May 10th


We are partnering with the Lupus Alliance of Upstate 

New York (LAUNY) to sponsor Enhancing Lives by 

Engaging, Empowering and Elevating the Lupus 

Community Education Symposiums in Syracuse 

May 12th and Buffalo on June 30th. 


Syracuse Flyer

Buffalo Flyer 


Registration Website


There are over 100 autoimmune conditions impacting 50 million
Americans and yet these diseases remain elusive and usually require
seeing multiple physicians over several years to reach a diagnosis. 

Lupus and Allied Diseases Association (LADA) joined together with
advocacy partners Global Healthy Living Foundation (GHLF),
National Infusion Center Association (NICA), and U.S. Pain 
Foundation to promote awareness during the month of March.

Click on the link below for the entire publication

Autoimmune Publication


The Step Therapy Reform Bill was signed into law on 
December 31, 2016 by Governor Andrew Cuomo. We thank the 
nearly 80 patient advocacy and provider organizations, the NYS
Legislature, and the bill sponsors Senator Catharine Young and
Assemblyman Matthew Titone for their tremendous support 
and efforts for nearly seven years. We applaud Governor Cuomo 
for standing with us by providing strong safeguards that will
 ensure proper access to treatments for patients when appropriate. 
Links to help with questions during the implementation of the
law for insurers, consumers and providers are below. 

December Press Release 

FAQ Guidance for Health Insurers on Law

Q & A on Law

Physician Form Requesting Review

The 18th Annual Lupus Charity Golf Classic
will be held on 
Thursday, August 23rd, 2018 
at the Shenendoah
 Golf Course at
Turning Stone Resort in Verona, NY

Event Poster 

Sponsor Packet

Golfer Packet


Lupus Research Alliance Board Secretary 
Robert Ravitz
(center right) and President & CEO Kenneth Farber (right)
receive our 
2017 Annual Research Donation of $75,000 
from Lupus and Allied Diseases Association President & CEO
Arntsen and Board Secretary David Arntsen (left) 
on October 23, 2017 at the Annual Scientific Meeting. We have
now donated $391,000 to the Lupus Research Alliance in the
past sixteen 
years and $564,000 overall to lupus research. 

Lupus and Allied Diseases Association President & CEO 
Kathleen Arntsen (left) presents our 2018 Annual Research
of $100,000 to Lupus Foundation of America CEO
Raymond (right) on March 14, 2018 in front of LADA's
on the LFA's donor wall. The grant is to fund pediatric
and mesenchymal stem cell research. We have now
$125,000 to the LFA in the past two years for research.


The 17th Annual Lupus Charity Golf Classic raised 
over $90,000.00 on Thursday, 
August 24th, 2017 
at the beautiful Shenendoah
 Golf Course at 
Turning Stone Resort in Verona, NY where 96 golfers 
and 30 volunteers participated in the patient-driven event. 

2017 Golf Classic Cart Sponsor National Infusion Center
Association and Global Healthy Living Foundation had 
the best team name "Weapons of Grass Destruction
Pictured above left to right are Brian Nyquist,
Johnson, Steve Marmaras and Zach Manfredi.

Click Here for more photos of the event.  

Contact Us:
Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY  13478
Telephone 315-829-4272
Toll Free 1-866-258-7874 or 1-866-2-LUPUS-4
Fax 315-829-4272
e-mail LupusInnovators@aol.com
or Info@LADAinc.org