Welcome




For the past 39 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, 2016 
our organization's administrative costs were 
less than 2.0% leaving 98.0% 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 affect 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 (LADA), Lupus 
Foundation of America (LFA), and Lupus Research Alliance (LRA)
 
collaborated on a Lupus Patient-Focused Drug Development Initiative. 

Lupus: Patient Voices Meeting was held 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.
Please visit lupuspfdd.org for more information on the project.
 

Post-Meeting Announcement

September 2017 Press Release

May 2017 Announcement


Lupus News Today Article

Patient Daily Article

Lupus PFDD Press Release



NYS LUPUS COMMUNITY ADVOCACY VICTORY

The Lupus Agencies of New York State (LANYS) realized dual
advocacy victories this legislative session in both the New York 
State Senate and Assembly with the unanimous passage
of S.5216A / A.3072A the Lupus Education and Outreach Bill
and S.3419C / A.2834D the legislation to limit Step Therapy
protocols. The groups have been coming to the State Capital
in Albany each May for the past eight years to increase public
awareness of Lupus and to garner support for education and
research programs and access to healthcare issues.
 

Click Here for Full Press Release

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 over the past 6 years. We applaud Governor Cuomo 
for standing with us by providing strong safeguards that will
 ensure proper access to treatments for patients when appropriate. 

ChangeTogether Article

January Article


December Press Release 

MHANY Link

FAQ Guidance for Health Insurers on Law

Q & A on Law


The Lupus Bill was signed into law on November 29, 2016
by Governor Andrew Cuomo. We commend the Governor for
supporting this important legislation and thank Senator
Diane Savino and Assemblywoman Crystal Peoples-Stokes as 
the bill sponsors and working with us to get it over the finish line.


November Press Release 




WHAT A DAY!!!

The 17th Annual Lupus Charity Golf Classic
raised over $90k on 
Thursday, August 24th, 2017
at the Shenendoah
 Golf Course at
Turning Stone Resort in Verona, NY

For More Info   
 



ANNUAL RESEARCH DONATION
 
 

Lupus Research Alliance Board Secretary 
Robert Ravitz
(center) receives our 
2016 Annual Research 
Donation of $35,000 from Lupus and Allied Diseases 
Association President & CEO Kathleen Arntsen (left)
and Board Secretary David Arntsen (right) 

on October 21, 2016 at the LRA Annual Scientific Meeting. 
We have now donated $316,000 to the LRA in the past 15 years.




Lupus Advocate Kaamilah Gilyard (left) with Kathleen Arntsen
(right) at the LRA Scientific Meeting in NYC. Both Ladies are
two of the strongest Patient Voices in the Lupus Community. 

Kathleen also participated in the 2015-16 Patient
Advocacy programs 
by sharing her
perspectives.

LRA Newsletter Interview

A link to the 2015 video interview is below.


Arntsen on Advocacy
 

                           


OUTSTANDING EVENT

The 17th Annual Lupus Charity Golf Classic raised 
over $90,000.00 on Thursday, 
August 25th, 2016
at the beautiful Shenendoah
 Golf Course at 
Turning Stone Resort in Verona, NY where 96 golfers 
and 25 volunteers participated in the patient-driven event. 


2016 Golf Classic Towel Sponsor Biotechnology Innovation
Organization Representative Brian O'Connor receiving an 
appreciation plaque from LADA President Kathleen Arntsen. 
Also pictured are teammates: Garrett Olds and GHLF  
Representatives Steve Marmaras and Ryan Johnson.


Honoring longtime volunteer Cathy Walseman for her courage in 
battling both lupus and lymphoma, pictured here with husband Bob.

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