For the past 38 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 their loved ones,
and promoting programs of public awareness, advocacy & research. 
For the Fiscal Year ending on September 30, 2014 our
organization's administrative costs were 6.0% leaving
94.0% of every dollar raised going directly to our Program Services!


It is our hope that if you have lupus or know someone who has lupus
you will use this website as a tool to take control and learn to live with
lupus.  We realize that lupus does not just affect an individual; lupus
affects the entire family.  We are here for you as you and your loved
ones continue on your lupus journey. 

News & Events



Lupus and Allied Diseases Association President/CEO and

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. 


Lupus Research Institute Chairmen Jack Lavery (left) and
Robert Ravitz (right) receive our 
2014 Annual Research
Donation of $20,500 
from Lupus and Allied Diseases 
Association President/CEO Kathleen Arntsen (center left)
on October 20th at the LRI Annual 
Scientific Meeting .
Also pictured is Annie Ravitz 
(center right). We have now
donated $270,000 to the
 LRI in the past 13 years.


On Wednesday, May 7, 2014 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 Anthony Brindisi were the 
Legislative Sponsors of the event.

Senator Joseph Griffo surrounded by NYS Lupus Advocates.

Assemblyman Anthony Brindisi with advocates in the Assembly Chamber.

Senator Kevin Parker with lupus advocates outside the Senate 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 will spend 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 
are sponsoring 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.


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



15th Annual Lupus Charity Golf Classic
will be held on Thursday, August 20, 2015 
Shenendoah Golf Course
Turning Stone Casino Resort
Verona, NY

2015 Golf Classic Sponsor Packet

2015 Golfer Packet

2015 Golf Classic Poster


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. 460)
would limit patient cost-sharing requirements for specialty tier
drugs and make necessary medications more accessible
by reducing excessive out-of-pocket expenses.

Take action by clicking on the Patient Advocates link below
and emailing Congress today. Share your personal
story about accessing necessary medications and urge your
Representative to cosponsor H.R. 460.

Patient Advocates: Urge Congress to Ensure
Access to Critical Treatments

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
14th Annual Lupus Charity Golf Classic

The 14th Annual Lupus Charity Golf Classic held
on Thursday, August 21, 2014 raised over $74,000 with
net proceeds of $57,000, 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


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Verona, NY  13478
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