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.
LUPUS NEWS TODAY Article on recent Congressional Briefing
courtesy of Charles Moore, BioNews Services, LLC
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
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
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.
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
(left) with BIO's Public Affairs Director Brian O'Connor
at the BIO Patient Advocacy Meeting
in October 2015
in Washington, DC. The advocates
attended sessions to
learn about current research & development
initiatives and health care access to treatment 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 will be guests in the NYS Senate
and Assembly as both houses recognize May
as Lupus Awareness Month. Senator Joseph Griffo
and Assemblyman Fred Thiele are the
Legislative Sponsors of the event.
Please let us know if you are interested in attending.
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 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.
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.
Assemblymember John T. McDonald II with Rare Disease Advocates
Senator Kemp Hannon with Rare Disease Advocates
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
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.
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 170315-829-4272 fax
Verona, NY 13478
1-866-258-7874 toll free