News and Events

IMPORTANT ACCESS ISSUE

Lupus and Allied Diseases Association Vice President 
Sandi Frear wrote an op-ed on the insurance practice of bait
and switch that ran in the Tampa Bay Times December 23rd.

  
Click for Sandi's Op-ed


LADA EXHIBITS AT ACR 2016

Lupus and Allied Diseases Association sponsored
the Lupus Exhibit at the ACR Scientific Meeting
November 12-15, 2016 in Washington, DC.
The Lupus Foundation of America and Lupus
Research Alliance shared the booth by also
exhibiting their materials. Kudos to LADA Board
Member David Arntsen for managing the booth
and thanks to all of the volunteers.


Volunteers Charlotta Norgaard from Lupus FFF,
and 
Kathleen Arntsen & David Arntsen from LADA


Volunteers Carly Harrison & Tiffany Peterson
from Lupus Chat



LADA Volunteers Kaamilah Gilyard & David Arntsen


Lupus Exhibit Volunteers Diomaris Gonzalez
from LRA & David Arntsen from LADA


BIO International Meeting

President & CEO Kathleen Arntsen and Vice President Jackie Taylor
attended the BIO International Scientific Meeting in San Francisco
where LADA had an exhibit in the Patient Advocacy Pavilion. They also
participated in partnering meetings, attended educational forums, 
networking events, and Kathleen presented a patient perspective 
on a panel sponsored by Precision Health Economics 
discussing "The Future of Biosimilars" on June 8, 2016.


  
Kathleen Arntsen with fellow panelists: Geoffrey Eich, Amgen; Darius 
Lakdawalla, USC & PHE; Tomas Philipson, U of Chicago & PHE; Dana 
Goldman, USC & PHE discussing the impact  biosimilars' policy will 
have on patient value and access at the BIO Meeting.
 


BIOSIMILARS FORUM

On May 4th LADA President Kathleen Arntsen participated
in a panel discussion on NYS Legislation S6311 / A8648
an act in relation to the substitution of biological
products for prescribed products in the capital
complex in Albany. She stressed the importance of
the bill in promoting patient safety and collaboration
among all member's of the health care team. After the
forum she met with Senator Kemp Hannon,
the Senate Bill Sponsor to discuss the bill.


Kathleen's Op-Ed


Kathleen Arntsen at the Discovering Cures Forum


Kathleen, Senator Kemp Hannon and Jackie Taylor


Speakers Kathleen Arntsen, Julie Hart,
Steve Marmaras & Dr. Rylan Hanks



Assemblyman Matthew Titone with advocates.


8th ANNUAL NYS LUPUS AWARENESS 
 


Senator Kevin Parker with Lupus Advocates


Senator Lanza with LADA Lupus Advocates and
Tiffany Peterson (2nd from left) representing ALR/LRI/SLE



Senator Joseph Griffo with LADA Advocates
Lisabeth Iglesias, Kathleen Arntsen and Jackie Taylor


AWARENESS 2015

On Wednesday, May 13, 2015 the 6 Lupus Agencies of
New York State were guests in the NYS Senate
and Assembly as both houses recognize May
as Lupus Awareness Month. Senator Joseph Griffo
and Assemblyman Anthony Brindisi were the
Legislative Sponsors of the event.
 
 
 
 Senator Joseph Griffo with NYS Lupus Advocates
 
 
Assemblyman Anthony Brindisi with NYS Lupus Advocates
 
 
 
Senator David Valesky with LADA Advocates 


Lupus Advocates with Assemblyman Brindisi, Assemblywoman
Peoples-Stokes, and Senator Griffo in the Assembly Chamber.


Click on the links below to view the Senate presentation 
and Joint Legislative Resolution

https://www.youtube.com/watch?v=fmKTqEJrHXM


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




 
2015 NYS RARE DISEASE DAY
       
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 spent 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 
sponsored 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.

Assemblyman John T. McDonald with Advocates

https://www.youtube.com/watch?v=UUD-GYIT8PE



Senator Kemp Hannon with Advocates

 
 
 
 

2014 RARE DISEASE DAY
       
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.



MAY AS 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.



NYS EVENT 2012

On Wednesday, May 9, 2012 all 6 Lupus Agencies of NYS
sponsored the 3rd Annual Lupus Awareness Event in
Albany at the Legislative Office Building (LOB) Well to
kick off Lupus Awareness Month.  Senator Joseph Griffo
was Prime Senate Sponsor and Assemblywoman
Vanessa Gibson was Prime Assembly Sponsor of the
2012 Event.  A presentation in the Well was followed by a
Senate Floor Presentation led by Senator Griffo and an
Assembly Chamber presentation by Assemblywoman Gibson.




Assemblywoman Ellen Jaffee, Assemblywoman Annette Robinson,
Honi Kurzeja, LAA, UNY; Yasmin Santiago SLE Foundation;
Assemblywoman Vanessa Gibson, Kathleen Arntsen LFMNNY,
Julie Mersereau Genesee
Valley; Diane Gross SLE Foundation;
Senator Betty Little, 2nd row Kathy Teague, LFMNNY;
Joann Quinn,
LAA, LI/Queens; Jaime Venditti, LFMNNY; last row Dale & Maryrose
Bullock, LFMNNY; Jackie Barry, G
Valley; Jackie Taylor, Phil Teague,
Stephanie Darwak and David Arntsen all LFMNNY Board Members


Lupus Agencies of NYS Leaders Kara Moran, LAA, NYST;
Kathleen Arntsen, LFMNNY; Julie Mersereau, LF of
Genesee Valley; Assemblywoman Vanessa Gibson,
Diane Gross, SLE Foundation, JoAnn Quinn, LAA,
LI-Queens Affiliate, Honi Kurzeja, LAA, UNY Affiliate



Lupus Foundation of Mid & NNY President/CEO Kathleen Arntsen
speaking with Senator Joseph
Griffo and Senator Mark Grisanti


JoAnn Quinn, LAA, LI/Queens Affiliate and Kathleen Arntsen, LFMNNY
sitting on the Senate floor as Senator Joseph Griffo introduced them




NYS EVENT 2011

On Wednesday, May 4, 2011 all 7 Lupus Agencies of NYS
sponsored the 3rd Annual Lupus Awareness Event in
Albany at the Legislative Office Building (LOB) Well to
kick off Lupus Awareness Month.  Senator Joseph Griffo
was Prime Senate Sponsor and Assemblywoman
Vanessa Gibson was Prime Assembly Sponsor of the
2011 Event.  A presentation in the Well was followed
by a Senate Floor Presentation led by Senator Griffo.


Lupus Leaders and Advocates from all over the state
with Senator Roy MacDonald, Senator Betty Little,
Senator Diane Savino, Senator Joseph Griffo, Senator
Kemp Hannon, and Senator David Valesky on the
Million Dollar Staircase in the NYS Senate Chamber.


LFMNNY President/CEO Kathleen Arntsen (center)
receiving the NYS Resolution declaring May as
Lupus Awareness Month in NYS from Senator
Kemp Hannon a Senate co-Prime Sponsor along
with Lupus Leaders & Advocates JoAnn Quinn,
Kate Anastasia, Ashley Ennis, Stephanie Darwak,
Violet Regan, Jaime Venditti, Jessica Rowshandel,
Jackie Taylor, & Honi Kurzeja.

NYS Lupus Resolution 2011

FIRST LUPUS TREATMENT IN 56 YEARS!

Click Here for FDA Announcement  
LRI National Coalition Announcement

Benlysta Q & A


URGENT ACTION NEEDED ON BENLYSTA® ACCESS ISSUES

Make Your Voices Heard by Clicking Here


NYS LUPUS AWARENESS 2010


On Wednesday, April 28, 2010 all 7 Lupus Agencies of NY
State sponsored the 2nd Annual Lupus Awareness Event 
in Albany at the Legislative Office Building (LOB) Well
to kick off Lupus Awareness Month.  Assemblywoman
RoAnn Destito was Prime Assembly Sponsor and
Senator Joseph Griffo was Prime Senate Sponsor
of the very successful 2010 Event.



Lupus Representatives from all across New York
State on the Assembly Floor with Assemblywoman
RoAnn Destito, Prime Assembly Sponsor of the Lupus
Awareness Event & Resolution.


Lupus Foundation of Mid and NNY Representatives
Dale and Maryrose Bullock, David Arntsen, Mike and
Robin Clancy, Senator Joseph Griffo, Kathleen Arntsen,
Stephanie Darwak, and Phil Teague receiving the
2010 Lupus Awareness Resolution.



Lupus Representatives Deana Fellows, James and
Patricia Mitchell, Eileen Aman, Phil Teague,
Senator Dave Valesky, Senator Joseph Griffo,
Kathleen and David Arntsen, Maryrose and Dale
Bullock, Julie Mersereau, and Senator James
Seward in the NYS Senate Chamber.


2010 Lupus Resolution


2010 Lupus Proclamation

NYS Rheumatology Society Meeting



Lupus Foundation of Mid & NNY President/CEO
Kathleen Arntsen (left), Dr. Michelle Petri,  Professor
Division of Rheumatology, Department of Medicine,
Johns Hopkins University; Co-director Hopkins
Lupus Cohort, a longitudinal study of morbidity
and mortality in systemic lupus erythematosus  
(center), and Julie Mersereau, Board Chair of the
Lupus Foundation of Genesee Valley NY at the
NYS Rheumatology Society Annual Meeting held 
on June 11-12, 2010 at the Grand Hyatt in NYC.


Annual Butterfly Gala

Pictured below left to right are:  LFMNNY Advocate
Sandi Frear, Dr. Stephen Katz, Director of NIAMS,
LFMNNY President/CEO Kathleen Arntsen and
Allan Fox, Director, Founder and Managing Partner of 
FoxKiser attending the LFA's Annual Butterfly Gala in
Washington, DC on May 12, 2010.




Pictured below left to right are:  Dr. Jeffrey Siegel,
from the CDER of the FDA and his wife
Dianne McCutcheon with LFMNNY President/CEO
Kathleen Arntsen at the Butterfly Gala.




 ARNTSEN RECEIVES FEDERAL APPOINTMENT

Lupus advocate and activist Kathleen
Arntsen has been appointed to a 5-year
term as a Special Government Employee
(SGE) as the Lupus Patient Representative
for the Office of Special Health Issues
with the FDA. She was originally nominated
in 2002 and the FDA has finally moved
forward on appointing SGE's to represent 
additional diseases such as lupus.  
She says that she is honored to represent
the lupus community and be a patient
voice at the FDA on  lupus-related issues.
 


Kathleen Arntsen currently serves as President/CEO
of the Lupus Foundation of Mid and Northern New York 
and has volunteered within the local lupus community
for the past 25 years. She has also been very active on
both the state and national level as a Patient Advocate
and is a persuasive and passionate representative
for lupus, rheumatologic, and autoimmune diseases. 
She has been a tenacious voice for the lupus
community and helped in putting a face to autoimmune
disease.  Kathleen strongly supports patient
empowerment and research programs aimed at
enhancing quality of life.  She is the first recipient of the
ACR/ARHP Ann Kunkel Advocacy Award and
the first co-recipient of the LFA’s National Advocacy
Award.  Kathleen is a graduate of Colgate University
and resides in Verona, NY with her very supportive
husband David.  Congratulations Kathleen, we are fortunate
to have you as our representative and locally as our CEO!


FREAR RECEIVES NATIONAL AWARD


Lupus Foundation of Mid and Northern New York 
Board Member Sandra Frear being presented
with the Ann Kunkel Advocacy Award by Association
of American College of Rheumatology President
Stanley Cohen, MD (left) and Rheumatology Health
Professionals President Pamela Degotardi (right) 
at the opening session of the ACR/ARHP Annual
Scientific Meeting on October 17, 2009 in Philadelphia, PA.


ANNUAL RESEARCH DONATION



Lupus Research Institute Chairmen Jack Lavery (left)
and Robert Ravitz (right) receive our largest ever 
Research Donation of $24,000 which represents 1/3 of our
annual income for 2010 from Lupus Foundation of Mid and NNY
President/CEO Kathleen Arntsen on October 18th at the
LRI Annual Scientific Meeting at the New York Marriott Marquis. 
We have now donated $151,500 to the LRI in the past 9 years.


Contact Us:

Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY  13478
Telephone 315-829-4272
Toll Free Phone 1-866-258-7874 or 1-866-2-LUPUS-4
Fax 315-829-4272
e-mail
LupusInnovators@aol.com