 |
|
 |
|
|
|
|
|
 |
|
|
|
|
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, 2016
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
GROUNDBREAKING LUPUS INITIATIVE
The Lupus and Allied Diseases Association (LADA), Lupus
Foundation of America (LFA), and Lupus Research Alliance (LRA)
announce that a Lupus Patient-Focused Drug Development Meeting,
Lupus: Patient Voices will be held on September 25, 2017. This
groundbreaking initiative will culminate in a meeting featuring
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.
Please visit lupuspfdd.org for more information on the meeting
and if you have lupus please take action by taking the survey
and help to advance lupus drug development.
May 2017 Announcement
Lupus News Today Article
Patient Daily Article
Lupus PFDD Press Release
NYS
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 eight years to increase public
awareness of
Lupus and to garner support for education and
research programs and access to healthcare
issues.
Click Here for Full Press Release
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 over the past 6 years. We applaud Governor Cuomo
for standing with us by providing strong safeguards that will
ensure proper access to treatments for patients when appropriate.
ChangeTogether Article
January Article
December Press Release
MHANY Link
FAQ Guidance for Health Insurers on Law
Q & A on Law
The Lupus Bill was signed into law on November 29, 2016
by Governor Andrew Cuomo. We commend the Governor for
supporting this important legislation and thank Senator
Diane Savino and Assemblywoman Crystal Peoples-Stokes as
the bill sponsors and working with us to get it over the finish line.
November Press Release
SAVE THE DATE !!!
The 17th Annual Lupus Charity Golf Classic
Will Take Place on Thursday, August 24th, 2017
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) receives our 2016 Annual Research
Donation of $35,000 from Lupus and Allied Diseases
Association President & CEO Kathleen Arntsen (left)
and Board Secretary David Arntsen (right)
on October 21, 2016 at the LRA Annual Scientific Meeting.
We have now donated $316,000 to the LRA in the past 15 years.
Lupus Advocate Kaamilah Gilyard (left) with Kathleen Arntsen
(right) at the LRA Scientific Meeting in NYC. Both Ladies are
two of the strongest Patient Voices in the Lupus Community.
Kathleen also participated in the 2015-16 Patient
Advocacy programs by sharing her
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.
Honoring longtime volunteer Cathy Walseman for her courage in battling both lupus and lymphoma, pictured here with husband Bob.
MAY IS LUPUS AWARENESS MONTH
On Wednesday, May 3, 2017 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
Legislative Sponsors of the event.
Senators Diane Savino and Joseph Griffo with
LANYS Advocates inside the Senate Chamber.
Assemblyman Fred W. Thiele, Jr. with LANYS Advocates
in the NYS Assembly Chamber.
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
|
|
|
|
 |
|
 |