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, 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

ANNUAL RESEARCH DONATION
 
 
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.

 

NIH ACTION PLAN FOR LUPUS RESEARCH

In response to a request from the Congressional Lupus Caucus,
the National Institutes of Health (NIH) has
released an 
Action Plan for Lupus Research. This report was a
collaborative effort, led by the National Institute of Arthritis
and Musculoskeletal and Skin Diseases (NIAMS) on

behalf of the NIH. It represents a synthesis of internal
and external input on
promising future research
directions to improve the lives of people with lupus.

In 2005, the House Appropriations Committee directed the NIH to
develop a plan to guide the nation's investment in lupus research. 
In response, The Future Directions of Lupus Research was released 
in 2007.  In July 2014, the Congressional Lupus Caucus requested 
that NIAMS, as the lead agency of the Lupus Federal Working Group,
develop a new coordinated action plan for lupus research.

"We have made great strides in our understanding of lupus

and its treatment since the publication of the 2007 report," 

noted NIAMS Director Stephen I. Katz, M.D., Ph.D. 

"Yet, much work remains to be done."

The plan was developed collaboratively among the NIH Institutes and
Centers with an interest and investment in lupus research, with
 extensive input from the broader community of researchers, health
care providers, patients, and the Lupus Federal Working Group.
Kathleen Arntsen, Dr. Betty Diamond and Dr. Marc Chevrier gave
input on behalf of Lupus and Allied Diseases Association during the
process. The plan highlights many opportunities to increase our
understanding of lupus at the molecular, individual, and population
levels, which ultimately should lead to safer and more effective
treatments and, eventually, curative strategies. In addition, it will
help to inform priority-setting processes among all lupus-related
organizations — federal, private, and non-profit — and serve
as a guide for lupus investigators.


PUBLIC HEALTH AGENDA FOR LUPUS

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

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.

 

ADVOCACY IN ACTION

 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
BIO 
Superhero contest at the opening concert


Boyz II Men backstage with Kathleen, Sandi & Diane 


NYS ACCESS TO CARE ADVOCACY

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.

http://www.twcnews.com/nys/capital-region/capital-tonight-interviews/2015/05/28/step-therapy-panel-052815.html

http://www.timesunion.com/news/article/Lawmakers-patients-call-for-curbs-to-step-6292617.php#photo-8061942



FEDERAL ADVOCACY

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 


WHAT AN HONOR


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



AUTOIMMUNE BRIEFING



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


AARDA Autoimmune Summit Panelists



ANNUAL LRI ADVOCACY



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



FDA COMMENTS

Lupus and Allied Diseases Association President/CEO an
d

 

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.

 

LADA REPRESENTATIVES ATTEND 
ANNUAL LUPUS GALA


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


ADVOCATES TRAVEL TO DC


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. 

 

MAY IS LUPUS AWARENESS MONTH

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

https://www.youtube.com/watch?v=fmKTqEJrHXM

 

Celebrate Lupus Awareness 

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



RARE DISEASE DAY
       
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

https://www.youtube.com/watch?v=UUD-GYIT8PE



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
 

 

SAVE THE DATE



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

Event Poster
Sponsor Packet
Golfer Packet

 
URGENT ACTION ALERT

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.

http://www.youtube.com/watch?v=_OBNq3clnpA



NEW YORK STATE TOPS
IN CLINICAL RESEARCH TRIALS
 
 
Lupus Foundation of Mid and Northern New York President/CEO
and Patient Advocate Kathleen Arntsen recently spoke at a
press
conference hosted by the Pharmaceutical Research and
Manufacturers
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
us.

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


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