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Welcome
For the past 40 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 impacted by lupus and
allied public awareness,
advocacy and research initiatives with the patient voice.
For the Fiscal Year ending on September 30, 2017
our organization's administrative costs were
less than 1.0% leaving more than 99.0% 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 impact the entire family. We are here
for you as you and your loved ones continue on your journey.
News & Events
GROUNDBREAKING LUPUS INITIATIVE
The Lupus and Allied Diseases Association, the Lupus
Foundation of America, and the Lupus Research Alliance
collaborated on a Lupus Patient-Focused Drug Development
(PFDD) Initiative holding the Lupus: Patient Voices Meeting
on September 25, 2017. This groundbreaking endeavor
culminated in a day-long meeting that featured a series
of facilitated panel and audience discussions designed
to provide the Food and Drug Administration (FDA) and
other stakeholders with perspectives from people with lupus.
The Lupus: Patient Voices Report, a comprehensive report composed
as a result of the
externally-led Lupus Patient-Focused Drug
Development (PFDD) Meeting and
pre-meeting survey, was released
on March 6th. More than 2,100 people with lupus
and their
representatives contributed information to this report, sharing
insights on living with lupus and their experiences with treatments.
This report is a major
milestone for the lupus community and
will be shared directly with the U.S. Food and
Drug Administration
(FDA) to help advance treatments for lupus. The Lupus: Patient
Voices Report and the
Lupus PFDD Meeting are the result of a
collaboration by the three national lupus organizations and
is a parallel effort to the U.S. Food and Drug Administration’s
(FDA) Patient-Focused Drug Development Initiative.
Please visit lupuspfdd.org for more information on the project.
Post-Report Launch Announcement
Post-Meeting Announcement
September 2017 Press Release
May 2017 Announcement
Lupus PFDD Press Release
MAY IS
LUPUS AWARENESS MONTH
LADA joined with the other members of the Lupus
Agencies
of New York State for the 10th Annual Lupus
Awareness
Month Recognition in the State Capitol on
May 23, 2018. Senator Joseph Griffo and Assemblymember
Fred Thiele sponsored the legislative resolutions.
The groups have been coming to Albany each May for
the past ten years to increase public awareness of Lupus
and to garner support for education and research
programs and access to healthcare issues.
The Lupus Agencies of NYS extend sincere appreciation
to our Legislative Resolution Sponsors and our Assembly
and Senate Chamber Hosts and their staff for making
the event possible and our dedicated lupus advocates.
The 2018 New York State Senate and Assembly
Joint Resolution for Lupus Awareness Month
Assemblymember John McDonald (front far left) and
Assemblymember Fred Thiele (center front) with
lupus advocates in the NYS Assembly Chamber.
Senator Kevin Parker (center front) and Senator
Kemp Hannon (center back) with lupus
advocates in the NYS Senate Chamber.
Assemblymember Fred Thiele (center) with LADA
Board Member Samantha Darwak (left) and
President & CEO Kathleen Arntsen (right).
Senator Kemp Hannon (2nd left) and Senator
Kevin Parker (far right) with lupus advocates
Carly Harrison (left), Kathleen Arntsen (center,
and Monique Gore-Massy (2nd from right).
MAY 10TH
IS WORLD LUPUS DAY
Lupus and
Allied Diseases Association is honored
to be a member of the World Lupus Federation
participating in the 15th annual observance
of World Lupus Day on May 10, 2018 along with
200 lupus groups from around the world.
A global
health problem, lupus affects people of all
nationalities, races, ethnicities, genders and ages.
While lupus knows no boundaries, knowing all you
can about lupus can help control its impact.
Click here
for more information about the effort
and make sure your sign the petition to make lupus
a priority to the WHO and read the Global Report.
Thank you to our amazing LADA Advocates for procuring
6 World Lupus Day Proclamations for our inaugural year
as members of the World Lupus Federation.
WLD Proclamation from NYS Senator Charles Schumer
WLD Proclamation from Rome, NY Mayor Jacqueline M. Izzo
Rome, NY Mayor Jacqueline M. Izzo (left) presenting their WLD
Proclamation to LADA Board Member Lisabeth Iglesias (right) EDUCATION
SYMPOSIUM
We are
partnering with the Lupus Alliance of Upstate
New York (LAUNY) to sponsor Enhancing Lives by
Engaging,
Empowering and Elevating the Lupus
Community
Education Symposiums in Syracuse
on May 12th
and Buffalo on June 30th.
Syracuse
Flyer
Buffalo Flyer Registration
Website
MARCH WAS AUTOIMMUNE AWARENESS MONTH
There are over 100 autoimmune conditions impacting 50 million
Americans and yet these diseases remain elusive and usually require
seeing multiple physicians over several years to reach a diagnosis.
Lupus and Allied Diseases Association (LADA) joined together with
advocacy partners Global Healthy Living Foundation (GHLF),
National Infusion Center Association (NICA), and U.S. Pain
Foundation to promote awareness during the month of March.
Click on the link below for the entire publication Autoimmune Publication
ADVOCACY VICTORY
The Step Therapy Reform Bill was signed into law on
December 31, 2016 by Governor Andrew Cuomo. We thank the
nearly 80 patient advocacy and provider organizations, the NYS
Legislature, and the bill sponsors Senator Catharine Young and
Assemblyman Matthew Titone for their tremendous support
and efforts for nearly seven years. We applaud Governor Cuomo
for standing with us by providing strong safeguards that will
ensure proper access to treatments for patients when appropriate.
Links to help with questions during the implementation of the
law for insurers, consumers and providers are below.
December Press Release
FAQ Guidance for Health Insurers on Law
Q & A on Law
Physician Form Requesting Review
The 18th Annual Lupus Charity Golf Classic
will be held on Thursday, August 23rd, 2018
at the Shenendoah Golf Course at
Turning Stone Resort in Verona, NY
Event Poster
Sponsor Packet
Golfer Packet
ANNUAL RESEARCH DONATION
Lupus Research Alliance Board Secretary Robert Ravitz
(center right) and President & CEO Kenneth Farber (right)
receive our 2017 Annual Research Donation of $75,000
from Lupus and Allied Diseases Association President & CEO
Kathleen Arntsen and Board Secretary David Arntsen (left)
on October 23, 2017 at the Annual Scientific Meeting. We have
now donated $391,000 to the Lupus Research Alliance in the
past sixteen years and $564,000 overall to lupus research.
Lupus and Allied Diseases Association President & CEO Kathleen Arntsen (left) presents our 2018 Annual Research
Donation of $100,000 to Lupus Foundation of America CEO
Sandra Raymond (right) on March 14, 2018 in front of LADA's
plaque on the LFA's donor wall. The grant is to fund pediatric
lupus and mesenchymal stem cell research. We have now
donated $125,000 to the LFA in the past two years for research.
OUTSTANDING EVENT
The 17th Annual Lupus Charity Golf Classic raised
over $90,000.00 on Thursday, August 24th, 2017
at the beautiful Shenendoah Golf Course at
Turning Stone Resort in Verona, NY where 96 golfers
and 30 volunteers participated in the patient-driven event.
2017 Golf Classic Cart Sponsor National Infusion Center
Association and Global Healthy Living Foundation had
the best team name "Weapons of Grass Destruction."
Pictured above left to right are Brian Nyquist,
Ryan Johnson, Steve Marmaras and Zach Manfredi.
Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY 13478
Telephone 315-829-4272
Toll Free 1-866-258-7874 or 1-866-2-LUPUS-4
Fax 315-829-4272
e-mail LupusInnovators@aol.com
or Info@LADAinc.org
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