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
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
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
collaboration with leading lupus and public health experts and
with lupus. Kathleen Arntsen sat on the Steering
Committee and helped develop the plan. The effort was made
through funding from the United States Centers
for Disease Control and
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.
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
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
Allied Diseases Association President/CEO and
National Patient Advocate Kathleen
Arntsen gave public
comments on December 7th at the FDA Oncologic Drugs
Committee meeting reviewing the application
for the first proposed biosimilar
a biologic treatment for neutropenia.
complex large molecule medicines
manufactured from living organisms.
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
among patient stakeholders calling for
expanded clinical trials and post marketing
be conducted to ensure safety, efficacy and tolerability.
The Advisory Committee recommended that the
EP2006, as a lower-cost biosimilar to NEUPOGEN, a biologic drug
used to help cancer and autoimmune patients fight off infection
chemotherapy. If approved it will be the first
biosimilar drug approved in the U.S.
LADA REPRESENTATIVES ATTEND
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.
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
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
as Rare Disease Day in the State of New York to increase
serious issues which affect the lives of
many citizens of New York
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
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
ALR-LRI Collaboration to Accelerate New Lupus Treatments
Moving at a Fast Pace
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.
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.
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
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
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The latest news in lupus research and drug development
Lupus Research Institute National Coalition Clinical Trials Website
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