Welcome




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 with lupus and allied 
diseases and conditions of unmet need as well as 
for their loved ones, and promoting programs of 
public awareness, advocacy & research.  

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
dollar 
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




GROUNDBREAKING LUPUS INITIATIVE

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
other 
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
Voices
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


MAY IS LUPUS AWARENESS MONTH

Please join us on Wednesday, May 23, 2018 as 

LADA joins with the other members of the Lupus 

Agencies of New York State for the 10th Annual Lupus 

Awareness Month Recognition in the State Capital. 
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.
 

 


 

Please send an e-mail to Info@LADAinc.org for
more 

information or if interested in attending.


 

MAY 10TH IS WORLD LUPUS DAY

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. 



LUPUS IN THE MILITARY WEBINAR


Free: One-hour, CME-accredited webinar about Systemic
Lupus Erythematosus (SLE), with particular attention paid
to the issue of the disease's growing prevalence in the
military veteran community on April 27 and May 18

Click Here to REGISTER 


EDUCATION SYMPOSIUM

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 
on 

May 12th and Buffalo on June 30th. 

 

Syracuse Flyer 

 

Registration Website



MARCH WAS AUTOIMMUNE AWARENESS MONTH 

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



ADVOCACY VICTORY

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


ANNUAL RESEARCH DONATION
 
 

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
Kathleen 
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
Donation 
of $100,000 to Lupus Foundation of America CEO
Sandra 
Raymond (right) on March 14, 2018 in front of LADA's
plaque 
on the LFA's donor wall. The grant is to fund pediatric
lupus 
and mesenchymal stem cell research. We have now
donated 
$125,000 to the LFA in the past two years for research.
                       

OUTSTANDING EVENT

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,
Ryan 
Johnson, Steve Marmaras and Zach Manfredi.
























Click Here for more photos of the event.  

MAY IS LUPUS AWARENESS MONTH

On Wednesday, May 3, 2017 the 6 Lupus Agencies of
New York State were guests in the NYS Senate 
and Assembly as both houses recognized May
as Lupus Awareness Month. Senator Joseph Griffo
and Assemblyman Fred W. Thiele, Jr. were the 
Legislative Sponsors of the event.


Senators Diane Savino and Joseph Griffo with
LANYS Advocates inside the Senate Chamber.


Assemblyman Fred W. Thiele, Jr. with LANYS
Advocates 
in the NYS Assembly Chamber.




 
 
 
 
 
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