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
THE POWER OF ADVOCACY
President and CEO of Lupus and Allied Diseases
Association, participated in a video project through the Patients
for Biologics Safety and Access (PBSA) to promote the power
of advocacy. The overview listed her as "a powerful
patient advocate from New York living with multiple autoimmune
diseases, including lupus. She works with other patient advocates
to make their
voices heard in critical patient safety policy
Click Here for Video
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 8 years to increase public awareness of
Lupus and to garner support for education programs and critical access
issues such as step therapy.
Click Here for Full Press Release
PATIENT VOICE IS RELEVANT
The patient voice has become more relevant than ever before
with initiatives like Patient-Focused Drug Development,
Precision Medicine, the House 21st Century Cures, and the Senate
Healthier Americans. LADA has been at the forefront in
encouraging patient-inclusion as an equal stakeholder in all
access to healthcare and research efforts. The patient voice
is now welcome and necessary, and we are participating
in as many forums as possible to ensure one is present and heard.
President & CEO Kathleen Arntsen and Vice President Jackie Taylor
attended the BIO International Scientific Meeting in San Francisco
where LADA had an exhibit in the Patient Advocacy Pavilion. They also
participated in partnering meetings, attended educational forums,
networking events, and Kathleen presented a patient perspective
on a panel sponsored by Precision Health Economics
discussing "The Future of Biosimilars" on June 8, 2016.
Kathleen Arntsen with fellow panelists: Geoffrey Eich, Amgen; Darius
Lakdawalla, USC & PHE; Tomas Philipson, U of Chicago & PHE; Dana
Goldman, USC & PHE discussing the impact biosimilars' policy will
have on patient value and access at the BIO Meeting.
GROUNDBREAKING LUPUS INITIATIVE
The Alliance for Lupus Research (ALR), Lupus and Allied Diseases
(LADA), Lupus Foundation of America (LFA), and Lupus Research
(LRI) announce that a Lupus Patient-Focused Drug Development Meeting,
Lupus: Patient Voices will be held in spring 2017. This groundbreaking
initiative will culminate in a meeting
featuring a series of facilitated panel
discussions designed to provide the Food
and Drug Administration (FDA)
with perspectives from people with lupus,
advocates and caregivers.
Lupus PFDD Press Release
RECORD BREAKING EVENT
The 16th Annual Lupus Charity Golf Classic set a new
record raising just over $100,000.00 on Thursday,
August 25th, 2016 at the Kaluhyat Golf Course at
Turning Stone Resort in Verona, NY where 111 golfers
and 20 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.
President Kathleen Arntsen sharing the record breaking news
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.
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.
Kathleen also participated in the Patient Advocacy portion of the LRI/ALR
Annual Scientific Meeting by sharing her lupus journey and advocacy
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.
LUPUS NEWS TODAY Article on recent Congressional Briefing
courtesy of Charles Moore, BioNews Services, LLC
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 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.
Lupus and Allied Disease Association President and CEO
Kathleen Arntsen pictured with Congressman Richard Hanna during
the Lupus Annual Advocacy Day on March 15th in Washington, DC
Lupus and Allied Diseases Association Vice President Jackie Taylor
(left) with BIO's Public Affairs Director Brian O'Connor (right) at the
BIO Patient Advocacy Meeting in October 2015 in Washington, DC.
The advocates attended sessions to
learn about current research
initiatives and health care access issues.
LADA Advocate Lisabeth Iglesias pictured with Brian O'Connor
GHLF & LADA Advocates met with Step Therapy Bill Sponsors
Assemblyman Matthew Titone and Senator Catharine Young
to discuss A2834/S3419 on March 1st
Sarah Oanan, Lisabeth Iglesias, Assemblyman Titone, Senator Young,
Kathleen Arntsen & Steve Marmaras overlooking the NYS Senate Chamber.
MAY IS LUPUS AWARENESS MONTH
On Wednesday, May 18, 2016 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
World Autoimmune Arthritis Day (WAAD) Awarded
Kathleen Arntsen an Inspirational Patient Award
on May 20, 2016 in honor of her advocacy efforts.
On Wednesday, March 2nd, representatives from the Lupus
and Allied Diseases Association, the New York
State Rare Disease Alliance, and the National Organization for
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.
Assemblyman John T. McDonald III with Rare Disease
Advocates in the Assembly Chamber.
Senator Kemp Hannon with Rare Disease Advocates
outside the Senate Chamber.
Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY 13478
Toll Free 1-866-258-7874 or 1-866-2-LUPUS-4