Welcome


For the past 38 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, 2013 our
organization's administrative costs were 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

On Wednesday, May 7, 2014 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 Anthony Brindisi will be the 
Legislative Sponsors of the event.

You can participate in Lupus Awareness Month
by supporting our World Lupus Day Victorian
Tea Fundraiser on May 1, 2014. 

Click Here 


RARE DISEASE DAY

On Wednesday, February 26, representatives from the Lupus
Foundation of Mid & Northern New York, the New York 
State Rare Disease Alliance, the National Organization for 
Rare Diseases, and the New York Biotechnology 
Association spent the day at the Capitol to raise 
awareness among the general public and legislature 
about rare diseases and their impact on patients’ lives.
Senator Kemp Hannon and Assemblyman John McDonald 
sponsored a resolution proclaiming February 28, 2014, 
as Rare Disease Day in the State of New York to increase 
awareness of serious issues which affect the lives of 
many citizens of New York State.
 
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 need, 
few of which have cures or specific drugs to treat 
symptoms, and are often not diagnosed for many years.

 
 
 
 

 


ANNUAL RESEARCH DONATION
 
Lupus Research Institute Chairmen Robert
Ravitz (left) and Jack Lavery (right) receive our 
largest ever Research Donation of $35,000
which represents a little over 1/3 of our annual 
income for 2013 from Lupus Foundation of
Mid and Northern NY President/CEO Kathleen
Arntsen (center) on October 7th at the LRI Annual
Scientific Meeting at the New York Marriott Marquis. 
We have now donated $249,500 which is a quarter
of a million dollars to the LRI in the past 12 years!

The Lupus Research Institute Announces National 
 Partnerships to Drive New Therapies in Lupus

Click Here 

ALR-LRI Collaboration to Accelerate New Lupus Treatments
Moving at a Fast Pace


Click Here
 

 



14th Annual Lupus Charity Golf Classic
Thursday, August 21st 
Shenendoah Golf Course
Turning Stone Casino Resort
Verona, NY


Sponsor Packet

Golfer Packet

Promotional Poster


Lupus Agencies of New York State
exhibit at the NYS Fair for the 24th Year!

For more photos
Click Here


For Video

Click Here

 
URGENT ACTION ALERT

Urge Congress to Ensure Access
to Critical Treatments

Biologic medications are critical for treating many chronic,
disabling, and life threatening conditions. However, some
health insurance companies are limiting patients’ ability
to access these treatments by placing them in “specialty tiers”
that require patients to pay up to 50 percent of drug costs
rather than a traditional fixed co-payment. This causes patients’
out-of-pocket costs to skyrocket to hundreds or even thousands
of dollars per month for a single medication.

The bipartisan Patients' Access to Treatment Act (H.R. 460)
would limit patient cost-sharing requirements for specialty tier
drugs and make necessary medications more accessible
by reducing excessive out-of-pocket expenses.

Take action by clicking on the Patient Advocates link below
and emailing Congress today. Share your personal
story about accessing necessary medications and urge your
Representative to cosponsor H.R. 460.

Patient Advocates: Urge Congress to Ensure
Access to Critical Treatments
 


Please Take a NY Minute and
Make Your Voices Heard




Contacting Your Elected Officials

Please click here to contact your public officials to
voice concerns about issues that are important
to you and your loved ones. Become part of the
solution and be proactive in improving health care.
Thank you very much.

 
 
 
 
 
 
Recordbreaking Fundraising Results at the
13th Annual Lupus Charity Golf Classic

The 13th Annual Lupus Charity Golf Classic held
on Friday, August 9, 2013 raised over $69,000 with
net proceeds of $53,000, 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.




 









For more photos click here

 
Lupus Research Institute Victories Continue 

We are honored to be part of the Lupus Research
Institute National Coalition and take pride in our
collaborative advocacy and research achievements.
To read about our successes
click here



NYS Legislature Recognizes Lupus

May is Lupus Awareness Month


On Wednesday, May 1, 2013 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.
Click on the links below to view the presentations.


 
 
 
LUPUS AWARENESS DAY 2013
IN NY STATE CAPITAL

Assemblymember Vanessa L. Gibson
with Lupus Agencies of NYS Leaders
on the Capitol Steps
 
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
legislative resolutions.



For more photos of the Awareness Event 
Click Here

 
 
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.

http://www.youtube.com/watch?v=_OBNq3clnpA



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
media coverage.  Click on the You Tube link to the news segment on
the local ABC affiliate WSYR-TV the night of the press conference.
 
 
 
 
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. 
 
To learn more about our NYS efforts click on these links

For the actual legislation
click here

 

 

 

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.

 



Research Highlights
   
The latest news in lupus research and drug development 
Click Here
 
Lupus Research Institute National Coalition Clinical Trials Website

  


Online Shopping for Lupus Foundation of Mid and Northern NY


http://www.iGive.com/LupusMidNNY
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 139
Utica, NY  13503
315-829-4272 phone
315-829-4272 fax
1-866-258-7874 toll free