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, 2015 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

Lupus Research Institute Chairman Robert Ravitz
(left) receives our 
2015 Annual Research 
Donation of $10,000 
from Lupus and Allied Diseases 
Association President & CEO Kathleen Arntsen (right) 
on October 19, 2015 at the LRI/ALR Annual 
Scientific Meeting. 
We have now donated $281,000 to the LRI in the past 14 years.



The first-ever national roadmap to improve treatment and care
for people with lupus was unveiled during a briefing on Capitol Hill
on October 29. Lupus and Allied Diseases Association President and
CEO Kathleen Arntsen and Vice President Sandi Frear attended
the launching. The National Public Health Agenda for Lupus
identifies public health priorities, strategies and recommendations
that are relevant and complementary to efforts in lupus biomedical
research and clinical care and serves as a model of a
comprehensive approach to lupus care and treatment.

The Agenda was developed by the Lupus Foundation of America
and the National Association of Chronic Disease Directors in
collaboration with leading lupus and public health experts and
people living with lupus. Kathleen Arntsen sat on the Steering
Committee and helped develop the plan. The effort was made
possible through funding from the United States Centers
for Disease Control and Prevention (CDC).

To see a copy of the plan click on the link below.

Click Here



 Lupus and Allied Diseases Association President & CEO
Kathleen Arntsen was recently honored as a finalist in the
BIO Superhero Contest as a Patient & Advocate at the
June 15-18 BIO International Meeting in Philadelphia, PA.
LADA Vice President Sandi Frear and LRI Program Director
Diane Gross also attended the 3 day event which
included partnering meetings with fellow patient
advocacy groups and research organizations.

Kathleen Arntsen & Sandi Frear at the 
LADA Booth at the BIO Meeting

Kathleen being honored by BIO President Jim
Greenwood onstage with fellow nominees of the
Superhero contest at the opening concert

Boyz II Men backstage with Kathleen, Sandi & Diane 


Lupus and Allied Diseases Association advocates Kathleen
Arntsen and Lisabeth Iglesias attended a NYS Advocacy
Event on May 28th at the state capital to promote
awareness around step therapy protocol.

Kathleen speaking at the step therapy press
conference about her personal experience with
step therapy/fail first protocol pictured with
fellow NYS patient advocates.

Click on the links below for the Capital Tonight show
video with Kathleen and other advocates and the Times
Union article on step therapy/fail first protocol and the 
advocacy efforts to promote awareness to change
the current insurance practice in the state.




Lupus and Allied Diseases Association President & CEO
Kathleen Arntsen and Advocate Jacquelyn Mitchell 
attended the BIO Annual Legislative Fly-In April 14-15 
in Washington, DC representing New York BIO


 New York BIO Advocates meet with Congressman
Richard Hanna on April 15, 2015


Kathleen Arntsen participated in a patient advocacy panel
at the BIO Annual Legislative Training on April 14, 2015
giving an overview of our organization 

New York BIO Executive Director Nathan Tinker, 
Board Chairman Bob Easton, and LADA Advocates
at the Folger Shakespeare Library during the
BIO Opening Reception April 14th 


Sandi Frear and Kathleen Arntsen pictured above
with Representative Lois Capps and NIH Director
Francis Collins at the Society for Women's Health
Research 25th Anniversary Gala on March 26th


Kathleen Arntsen pictured above with fellow
panelists, all of whom spoke at the American
Related Diseases (AARDA)
Congressional Briefing on Biosimilars 
on March 24th in Washington, DC

AARDA Autoimmune Summit Panelists


Lupus and Allied Disease Association Advocates
Sandi Frear, Kathleen Arntsen and Joshua Nachman
pictured with Congressman Richard Hanna during
the Lupus Research Institute Annual Advocacy Day on
March 24th in Washington, DC


Lupus and Allied Diseases Association President/CEO an


National Patient Advocate Kathleen Arntsen gave public

comments on December 7th at the FDA Oncologic Drugs

Advisory Committee meeting reviewing the application

for the first proposed biosimilar to NEUPOGEN, 

a biologic treatment for neutropenia. 

Biologics are complex large molecule medicines

manufactured from living organisms. Biosimilars are

follow-on biologics and unlike generic copies of traditional

small molecule drugs, biosimilars will be therapies that are 

similar to, but not the same as, the original product.

Among 18 public speakers, Kathleen expressed a prevailing

viewpoint among patient stakeholders calling for

expanded clinical trials and post marketing surveillance to

be conducted to ensure safety, efficacy and tolerability. 

The Advisory Committee recommended that the FDA approve

EP2006, as a lower-cost biosimilar to NEUPOGEN, a biologic drug

used to help cancer and autoimmune patients fight off infection

while undergoing chemotherapy.  If approved it will be the first 

biosimilar drug approved in the U.S.



Lupus and Allied Diseases Association Representatives
(left to right) David Arntsen, Jacquelyn Mitchell, Kathleen
Arntsen and Stephanie Darwak at the November 
24th Life Without Lupus Gala in New York City

David and Kathleen Arntsen with LRI Chairman Robert J. Ravitz


Lupus and Allied Diseases Association President Kathleen 
Arntsen (left) with advocates Jacquelyn Mitchell (center) 
and Lisabeth Iglesias (right) at the BIO Patient Advocacy Meeting 
on October 14-15, 2014 in Washington, DC. The advocates 
attended sessions to learn about current research & development 
initiatives and health care access to treatment issues. 



On Wednesday, May 13, 2015 the 6 Lupus Agencies of
New York State will be guests in the NYS Senate 
and Assembly as both houses recognize May
as Lupus Awareness Month. Senator Joseph Griffo
and Assemblyman Anthony Brindisi are the 
Legislative Sponsors of the event.

Senator Joseph Griffo surrounded by NYS Lupus Advocates.

Assemblyman Anthony Brindisi with NYS lupus
advocates in the Assembly Chamber.

Senator David Valesky with lupus advocates Kathleen
Arntsen, Anne McQuaid, and Lisabeth Iglesias.

Lupus Advocates with Assemblyman Brindisi, Assemblywoman
Peoples-Stokes, and Senator Griffo in the Assembly Chamber.

Click on the links below to view the Senate presentation 
and Joint Legislative Resolution



Celebrate Lupus Awareness 

You can participate in Lupus Awareness Month
by supporting our World Lupus Day Victorian
Tea Fundraiser during the month of May. 

On Wednesday, March 4th, representatives from the Lupus
and Allied Diseases Association, the New York 
State Rare Disease Alliance, the National Organization for 
Rare Diseases, and the New York Biotechnology 
Association spent the day at the Capitol to raise 
awareness among the general public and legislature 
about rare diseases and diseases of unmet need
and their impact on patients’ lives.
Senator Kemp Hannon and Assemblyman John McDonald 
sponsored a resolution proclaiming February 28, 2015, 
as Rare Disease Day in the State of New York to increase 
awareness of serious issues which affect the lives of 
many citizens of New York State.
National Rare Disease Day is an observance held 
on the last day of February every year to raise 
awareness of rare diseases and diseases of unmet need, 
few of which have cures or specific drugs to treat 
symptoms, and are often not diagnosed for many years.

Assemblyman John T. McDonald with Advocates


Senator Kemp Hannon with Advocates


The Lupus
Research Institute Announces National 
 Partnerships to Drive New Therapies in Lupus

Click Here 

ALR-LRI Collaboration to Accelerate New Lupus Treatments
Moving at a Fast Pace

Click Here



16th Annual Lupus Charity Golf Classic
will be held on Thursday, August 25, 2016 
Shenendoah Golf Course
Turning Stone Casino Resort
Verona, NY


Urge Congress to Ensure Access
to Critical Treatments

Biologic medications are critical for treating many chronic,
disabling, and life threatening conditions. However, some
health insurance companies are limiting patients’ ability
to access these treatments by placing them in “specialty tiers”
that require patients to pay up to 50 percent of drug costs
rather than a traditional fixed co-payment. This causes patients’
out-of-pocket costs to skyrocket to hundreds or even thousands
of dollars per month for a single medication.

The bipartisan Patients' Access to Treatment Act (H.R. 1600)
would limit patient cost-sharing requirements for specialty tier
drugs and make necessary medications more accessible
by reducing excessive out-of-pocket expenses.


Please Take a NY Minute and
Make Your Voices Heard

Contacting Your Elected Officials

Please click here to contact your public officials to
voice concerns about issues that are important
to you and your loved ones. Become part of the
solution and be proactive in improving health care.
Thank you very much.

Recordbreaking Fundraising Results at the
15th Annual Lupus Charity Golf Classic

The 15th Annual Lupus Charity Golf Classic held
on Thursday, August 20, 2015 raised over $74,000 with
net proceeds of $59,000, a new record. The tournament
was held at the beautiful Shenendoah Golf Course at
Turning Stone Casino Resort in Verona, NY.
We sincerely thank our golfers, sponsors, supporters,
and volunteers for making the event such a
tremendous success year after year.



For more photos click here

Lupus Research Institute Victories Continue 

We are honored to be part of the Lupus Research
Institute National Coalition and take pride in our
collaborative advocacy and research achievements.
To read about our successes
click here

LFMNNY Visits Capitol Hill with LRI Coalition

LFMNNY President/CEO Kathleen Arntsen and Program Director
Sandi Frear attended the LRI National Coalition Annual
Advocacy Event March 19 & 20 with advocates from all
over the nation. Kathleen provided a passionate account
of lupus at the Senate Briefing. Click on the link below to view.


Lupus Foundation of Mid and Northern New York President/CEO
and Patient Advocate Kathleen Arntsen recently spoke at a
conference hosted by the Pharmaceutical Research and
of America (PhRMA) and New York Health
Works to
announce the release of the  report.
Research In Your Backyard: Developing Cures, Creating Jobs

The most striking finding is that one-third of all clinical trials in
the United States are conducted in New York, making the state
a world
leader in clinical research.
Here is the presentation given including links to a video with an
overview of clinical trials, as well as a summary of the event and
media coverage.  Click on the You Tube link to the news segment on
the local ABC affiliate WSYR-TV the night of the press conference.
Lupus Agencies of New York State
Lead the Charge on State Advocacy

The 6 NYS Lupus Agencies are once again
taking a lead on access to care issues that
impact our community. 

Hi, Take a New York minute and make your voices heard
on an
important health care issue that impacts our ability to
receive the most suitable treatments. Let your NYS Legislators
know that Step Therapy/First Fail
protocol delays patient access
to medications, creates more obstacles for
patients and physicians
to overcome, denies continuity of care, and FAILS all of

Will you please sign this petition?  Thank you. 
To learn more about our NYS efforts click on these links

For the actual legislation


If you are Photosensitive or just want to protect yourself from the sun
we just received sun protective clothing donations from Coolibar Sun
Protective Clothing.  Please contact us at the office 315-829-4272
or by e-mail if interested in finding out more about these products.


Research Highlights
The latest news in lupus research and drug development 
Click Here
Lupus Research Institute National Coalition Clinical Trials Website


Online Shopping for Lupus Foundation of Mid and Northern NY

If you are an online shopper please consider clicking on the above link and a portion of the price of your order will be donated to us.  It does not cost you anything extra.  We will receive an additional $5 contribution if you register and purchase something at www.iGive.com within 45 days of joining.  Just make sure you sign up with iGive.com and choose us as your charity.  Thank you and Happy Shopping! 

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 PO Box 170
Verona, NY  13478
315-829-4272 phone
315-829-4272 fax
1-866-258-7874 toll free