Welcome
For the past 38 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 their loved ones,
and promoting programs of public awareness, advocacy & research.
For the Fiscal Year ending on September 30, 2014 our
organization's administrative costs were 6.0% leaving
94.0% 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
ADVOCACY IN ACTION
Lupus and
Allied Diseases Association President/CEO and
National Patient Advocate Kathleen
Arntsen gave public
comments on December 7th at the FDA Oncologic Drugs
Advisory
Committee meeting reviewing the application
for the first proposed biosimilar
to NEUPOGEN,
a biologic treatment for neutropenia.
Biologics are
complex large molecule medicines
manufactured from living organisms.
Biosimilars are
follow-on biologics and unlike generic copies of traditional
small molecule drugs, biosimilars will be therapies that are
similar to, but
not the same as, the original product.
Among 18 public speakers, Kathleen expressed a prevailing
viewpoint
among patient stakeholders calling for
expanded clinical trials and post marketing
surveillance to
be conducted to ensure safety, efficacy and tolerability.
The Advisory Committee recommended that the
FDA approve
EP2006, as a lower-cost biosimilar to NEUPOGEN, a biologic drug
used to help cancer and autoimmune patients fight off infection
while undergoing
chemotherapy. If approved it will be the first
biosimilar drug approved in the U.S. LADA REPRESENTATIVES ATTEND
Lupus and Allied Diseases Association Representatives
(left to right) David Arntsen, Jacquelyn Mitchell, Kathleen Arntsen and Stephanie Darwak at the November 24th Life Without Lupus Gala in New York City
David and Kathleen Arntsen with LRI Chairman Robert J. Ravitz
Lupus and Allied Diseases Association President Kathleen Arntsen (left) with advocates Jacquelyn Mitchell (center) and Lisabeth Iglesias (right) at the BIO Patient Advocacy Meeting on October 14-15, 2014 in Washington, DC. The advocates attended sessions to learn about current research & development initiatives and health care access to treatment issues.
ANNUAL RESEARCH DONATION Lupus Research Institute Chairmen Jack Lavery (left) and
Robert Ravitz (right) receive our 2014 Annual Research
Donation of $20,500 from Lupus and Allied Diseases
Association President/CEO Kathleen Arntsen (center left)
on October 20th at the LRI Annual Scientific Meeting .
Also pictured is Annie Ravitz (center right). We have now
donated $270,000 to the LRI in the past 13 years.
MAY IS LUPUS AWARENESS MONTH
On Wednesday, May 7, 2014 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 Anthony Brindisi were the Legislative Sponsors of the event.
Senator Joseph Griffo surrounded by NYS Lupus Advocates.
Assemblyman Anthony Brindisi with advocates in the Assembly Chamber.
Senator Kevin Parker with lupus advocates outside the Senate Chamber
Click on the links below to view the Senate presentation and Joint Legislative Resolution 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 4th, representatives from the Lupus
and Allied Diseases Association, the New York State Rare Disease Alliance, the National Organization for Rare Diseases, and the New York Biotechnology Association will spend 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 are sponsoring a resolution proclaiming February
28, 2015, 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.
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
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
14th Annual Lupus Charity Golf Classic
The 14th Annual Lupus Charity Golf Classic held
on Thursday, August 21, 2014 raised over $74,000 with
net proceeds of $57,000, 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.
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
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 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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Verona, NY 13478 315-829-4272 fax1-866-258-7874 toll free
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