For the past 37 years, the Lupus Foundation of Mid and Northern
New York, Inc. has been providing education, support, and
outreach services for people with lupus and their loved ones,
and promoting programs of public awareness, advocacy & research.
For the Fiscal Year ending on September 30, 2012 our
organization's administrative costs were only 1.0% leaving
99.0% of every dollar raised going directly to our Program Services!
It is our hope that if you have lupus or know someone who has lupus
you will use this website as a tool to take control and learn to live with
lupus. We realize that lupus does not just affect an individual; lupus
affects the entire family. We are here for you as you and your loved
ones continue on your lupus journey.
News & Events
May is Lupus Awareness Month
Help Send a Well Deserved Thank You!
What if you needed 30 prescription drugs a day but only 20
were covered by your insurance plan?
Or if the medication your doctor prescribed for you wasn’t
what you received because of the cost?
If you or a loved one have lupus or another chronic condition
and are covered by NYS Medicaid read this!
Because of the tireless efforts of many advocates, the Governor and
state lawmakers released the amended NYS 2013-14 Health budget bill
preserving prescriber prevails for Medicaid fee-for-service patients for
all drug classes and for Medicaid managed care patients for atypical
anti-psychotics. The budget also restored prescriber prevails for
an additional eight drug classes for Medicaid managed care
patients. “Prescriber prevails” is a patient protection that gives the
prescribing physician and not the insurer the final say on which specific
drugs New York’s Medicaid patients receive for their conditions such as lupus.
Although we did not get prescriber prevails in Medicaid managed care
for all drug classes, this is a huge victory made possible by an
advocacy effort that included New Yorkers from all over the state
making their voices heard.
Now we need your help in thanking our lawmakers for their courage
and determination in supporting this vital patient protection for
Medicaid patients. Please call our state leaders and your local
representatives and say:
“Thank you for supporting prescriber prevails in this year’s budget.
Your diligence and support of New York's Medicaid patients
is very much appreciated."
Senator Jeffrey Klein: 518-455-3595
Senator Dean Skelos: 518-455-3171
Senator Kemp Hannon: 518-455-2200
Speaker Sheldon Silver: 518-455-3791
Assemblyman Richard Gottfried: 518-455-4941
Senator David Carlucci: 518-455-2991
Assemblywoman Aileen Gunther: 518-455-5355
Larry Schwartz, Governor Andrew Cuomo’s office: 518-474-4246
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.
MAY AS LUPUS AWARENESS MONTH
LUPUS AWARENESS DAY 2013 IN NY STATE CAPITAL
For the 5th year in a row Lupus Foundation of
Mid and Northern New York Advocates joined
other Lupus Agency of NYS members to promote
May as Lupus Awareness Month in New York State.
On Wednesday, May 1, 2013 we were guests in the
both the Senate & Assembly Chambers in the
NYS Capitol Building in Albany, New York.
Senator Joseph Griffo and Assemblywoman
Vanessa L. Gibson sponsored the event and the
For more photos of the Awareness Event
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.
Click on the link below:
To learn more about our NYS efforts click on these links
For the actual legislation
On July 26, 2012, Rep. Ann Marie Buerkle (NY) introduced H.R. 6218
in the United States House of Representatives.
"The Mary Colella Autoimmune Disease Awareness Act of 2012"
Read Full Text
Read AARDA Press Release
The bill provides for the establishment of the Autoimmune
Diseases Interdepartmental Coordinating Committee. The
bill was introduced with 13 bipartisan cosponsors including
Representative Richard Hanna (NY).
Please take a moment and contact your Representative
in Washington, tell them how important this bill is to the
autoimmune community and ask for their support.
Find out how to Locate Your Rep
Find out how to
Lupus Foundation of Mid and Northern New York
Volunteers advocate for Lupus Issues on the Hill
Congressman Richard Hanna (center) from the 24th District
in NY with LFMNNY advocates Sandi Frear, Jackie Taylor,
Kathleen Arntsen, and Maryrose Bullock.
For more pictures click here
ANNUAL RESEARCH DONATION
Lupus Research Institute Chairmen Jack Lavery (left)
and Robert Ravitz (right) receive our largest ever
Research Donation of $32,000 which represents a little
over 1/3 of our annual income for 2012 from Lupus
Foundation of Mid and NNY President/CEO Kathleen
Arntsen (center) on October 22nd at the LRI Annual
Scientific Meeting at the New York Marriott Marquis.
We have now donated $214,500 to the LRI in the past 10 years.
During the LRI Scientific Meeting the Lupus Research Institute
announced Pivotal Findings on Autoimmune Research
RECORDBREAKING GOLF EVENT !
The 12th Annual Lupus Charity Golf Classic was held
on Friday, August 10, 2012 at Shenendoah Golf Club
at Turning Stone Resort Casino with a recordbreaking $48,000
in net proceeds being raised! For pictures and results
LUPUS AGENCIES OF NEW YORK STATE EXHIBIT
AT THE NY STATE FAIR FOR 23RD YEAR!
For more photos Click Here
Local Poet Raises Awareness
On July 14th Cassandra Colon or KatSoPoetic as she is known
held a poetry reading and lupus awareness event at
Figure 10 on Pearl St. in Albany. 31 people attended to
learn about lupus and help raise funds for lupus
awareness. Attendees received orange loop bracelets.
Kat raised $155 in proceeds to go towards the state fair exhibit.
Thank you Kat!
LFMNNY Advocate Receives Federal Appointment
If you are Photosensitive or just want to protect yourself from the sun
we just received sun protective clothing donations from Coolibar Sun
Protective Clothing. Please contact us at the office 315-829-4272
or by e-mail if interested in finding out more about these products.
Recent Education Meeting
The latest news in lupus research and drug development
Lupus Research Institute National Coalition Clinical Trials Website
Online Shopping for Lupus Foundation of Mid and Northern NY
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