Education and Awareness

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Education Symposium Road Show

We are excited to announce that Lupus and Allied Diseases Association is in the process of taking our Enhancing Lives by Empowering the Lupus Community Education Symposium on the road to Hawaii, California and Colorado this year. The purpose of this initiative is to provide an educational program on Clinical Research Trials and Participation, Patient Empowerment, an Overview of Biological Drugs, Infusions, Treatment Access Challenges, and Tools for Survival when Dealing with Chronic Disease. A list of regional lupus clinical trial opportunities, patient empowerment and advocacy resource materials and a list of current healthcare access efforts are available for distribution. We chose to hold our event in three areas in the United States where there is a need for greater knowledge of the topics being presented. The program was FREE but people were required to register to attend.

We held all 3 events and they were a tremendous success based on the input we received from attendee evaluations. The first program was held on Saturday, March 30, 2019 at the Ko’olau Ballrooms & Conference Center in Kaneohe, HI  and was hosted by Sjögren's Lupus Foundation of Hawaii (SLFH), and Lupus and Allied Diseases Association (LADA). The second program was held on Wednesday, April 3, 2019 at the San Francisco Marriott Fisherman’s Wharf in San Francisco, CA and was hosted by Looms for Lupus, Lupus and Allied Diseases Association (LADA), and More Than Lupus. The third was held on Saturday, October 5, 2019 at the Arapahoe Community College in Littleton, CO  and was hosted by Lupus and Allied Diseases Association and Lupus Foundation of Colorado.

 

Each symposium included an interactive word cloud representative of the attendees’ reactions to the education program. 

 Hawaii Symposium

 

 

 

 

 

 

 

 



                                                                            

 


 

 San Francisco Symposium


 


 

 

 

 

 



 

 Colorado Symposium 



 

    

We sincerely appreciate the generous support
of our Education Symposium Sponsors

 

HOPE IS ON THE HORIZON PROJECT SPONSOR

Amgen

GOLD PROGRAM SPONSORS

AbbVie

Aurinia Pharmaceuticals

Eli Lilly

Janssen / Johnson & Johnson Health Care Systems, Inc.


SILVER FRIEND SPONSOR

Horizon Pharma

BRONZE EXHIBIT SPONSORS

Amgen

Exagen Inc.


Thank you to our volunteers and anyone
who promoted the event for us.

                  Hawaii Word Cloud

Hawaii symposium attendees and speakers.

LADA volunteers Christine Von Raesfeld, Juana Mata, and Estela Mata with speakers Brian Nyquist, Kathleen Arntsen, David Arntsen and SLFH President Melaca Cannella.

San Francisco Word Cloud

Cristina Lanata, MD speaking on A Personalized Approach to Lupus Research at the San Francisco Symposium.

Symposium hosts Kelli Roseta and Christine Von Raesfeld from More than Lupus, Kathleen Arntsen from LADA, Estela Mata and Juana Mata from Looms for Lupus and David Arntsen from LADA.

Denver Word Cloud

Symposium speakers Brian Nyquist from NICA, Kathleen and David Arntsen from LADA and Dr. Susan Boackle from the University of Colorado School of Medicine at the Denver Symposium.

Enhancing Lives By Amplifying the Patient Voice Program

 

LADA launched Enhancing Lives By Amplifying the Patient Voice, a new patient-focused education initiative in January 2019. The objective of this program is to provide an opportunity for people with lupus to attend key advocacy and scientific meetings in order to learn, network, and share their unique patient viewpoints while informing other attendees and sharing their experiences within their communities. It is our hope that including multiple patient voices at these forums will offer valuable insights, and inspire dialogue, synergy and positive action within the lupus and rheumatology communities. The national meetings include: The Lupus Foundation of America (LFA) Annual Advocacy Summit in Washington, DC; the Lupus 2019 International Meeting in San Francisco, CA; and the American College of Rheumatology (ACR) Annual Scientific Meeting in Atlanta, GA.

We gratefully acknowledge the generous support of our Sponsors


GOLD LEVEL PROGRAM SPONSORS

Celgene
Mallinckrodt Pharmaceuticals

BRONZE LEVEL PROGRAM SPONSORS
Biotech Innovation Organization (BIO)

 

Enhancing Lives by Amplifying the Patient Voice Program participants at the LFA Advocacy Summit at the Mayflower Renaissance Hotel in Washington, DC on March 4-5, 2019. Above left, the patient advocates are pictured with Catherine Jackson, Director of Advocacy Relations at Mallinckrodt Pharmaceuticals.

Enhancing Lives by Amplifying the Patient Voice Program participants at the 13th Annual International Lupus Congress (Lupus 2019) at the San Francisco Marriott Marquis Hotel on April 5-8, 2019.  

LADA Attends NICA Inaugural Meeting

 

LADA President & CEO Kathleen Arntsen and Patient Advocate Christine Von Raesfeld joined over 500 infusion community stakeholders at the inaugural National Infusion Center Association (NICA) conference at the JW Marriott in downtown Austin, Texas June 21-22, 2019 to network and discuss access and treatment issues.

 

As patient stakeholders, we spent two days with infusion experts from across the country to address the most pressing challenges in the infusion industry and discuss how to preserve and advance this important healthcare delivery channel.

 

Hosted by the National Infusion Center Association (NICA), the nation’s non-profit advocacy voice for office-based infusion centers, this conference was a unique opportunity to network and learn from clinicians, practice managers, advocates and other professionals who play a role in the in-office infusion industry.  NICA released a groundbreaking publication NICA Minimum Standards for In-Office Infusion at the meeting. 

 

 

 

LADA President & CEO Kathleen Arntsen also participated as a panelist in the ADVOCATING FOR ACCESS TO CARE

session on June 21st with fellow panelists:  Madelaine Feldman, MD, Rheumatologist at The Rheumatology Group and President of the Coalition of State Rheumatology Organizations (CSRO), Adam Taliaferro, JD, State Advocacy and Alliance Development at Bristol-Myers Squibb and Moderator Brian Nyquist, MPh, Executive Director of NICA.

 

This panel discussion revolved around best practices in advocating for patient access to in-office infusion and was a meeting favorite.  Session Video

Both Kathleen and Christine also participated in a Treatment Adherence Summit Roundtable discussion held on June 23, 2019 in conjunction with the NICA Meeting by providing their unique patient perspectives on challenges faced by the patient community in adhering to treatment regimens.

We encourage anyone who is infused to join NICA's #ShareYourChair campaign to promote awareness of the infusion process throughout their social media networks.

NICA 2019

 

Pictured above left to right:  LADA was the hotel keycard sponsor for NICA's Annual Meeting; LADA Representatives Christine Von Raesfeld and Kathleen Arntsen at the #ShareYourChair exhibit; and Advocating for Access to Care Session participants (back row) Moderator Brian Nyquist, and panelists Adam Taliaferro, (front row) Kathleen Arntsen and Dr. Madelaine Feldman. 

LADA Attends BIO Convention

 

LADA joined 80 other patient advocacy organizations at the 2019 BIO International Convention hosted by the Biotechnology Innovation Organization (BIO) June 3-6, 2019 in Philadelphia, Pennsylvania. Over 16,000 people from around the world attended the conference at the Philadelphia Convention Center. It was the 5th year in a row that LADA was invited to participate in the conference and have a display in the Patient Advocacy Pavilion. We are thrilled to partner with BIO to advance innovation in life sciences and sound health care policies and are honored to be a member of New York BIO and BIO NJ.

 

Pictured above are LADA Advocates David Arntsen, Kathleen Arntsen, Christine Von Raesfeld, Jeffrey Anders and Spandan Chakrabarti attending the BIO International Convention in Philadelphia. Pictured right are the advocates in the Rare Disease Photo Booth promoting rare disease awareness.  

May is Lupus Awareness Month

 

LADA joined with the other members of the Lupus Agencies of New York State for the 11th Annual Lupus Awareness Month Recognition in the State Capitol on Wednesday, May 8, 2019. Senator Joseph Griffo and Assemblymember Fred Thiele sponsored the joint legislative resolutions.  The groups have been coming to Albany each May for the past eleven years to increase public awareness of Lupus and to garner support for education and research programs and access to healthcare issues. The Lupus Agencies of NY State extend sincere appreciation to our Legislative Resolution Sponsors and our Assembly and Senate Chamber Hosts and their staff for making the annual event possible.  We also thank AbbVie, AdvaMed, Mallinckrodt and Genentech for their generosity in supporting our program and thank our dedicated lupus advocates for attending.

 

Senator Diane Savino (left front second from end) and Senator Kevin Parker (right front second from end) with lupus advocates in the NY State Capitol building.

Senator Joseph Griffo (center front right) with LADA advocates in his office in the NY State Capitol building.

NY State Assembly Majority Leader Crystal Peoples-Stokes and Assemblyman Fred Thiele (back row left) with lupus advocates in the NY State Assembly Chamber in Albany on May 8, 2019.

NY State Assembly Majority Leader Crystal Peoples-Stokes (third from right) meeting with NY State lupus advocates to discuss lupus programs and healthcare access issues.

To view the New York State Lupus Awareness Legislative Resolution click here

Click here to watch the Lupus Agencies of New York State Advocates being recognized by Senator Griffo in the New York State Senate Chamber on May 8, 2019. 

Click here to watch the Lupus Agencies of New York State Advocates being recognized by Assemblyman Thiele and Assembly Majority Leader Peoples-Stokes in the New York State Assembly Chamber on May 8, 2019. 

May 10th is World Lupus Day

Lupus and Allied Diseases Association is honored to be a member of the World Lupus Federation participating in the 16th annual observance of World Lupus Day on May 10, 2019 along with 200
lupus groups from around the world. 

 

A global health problem, lupus affects people of all nationalities, races, ethnicities, genders and ages. While lupus knows no boundaries, knowing all you can about lupus can help control its impact. 

 

Click here for more information about the effort and make sure you sign the awareness pledge and take the survey if you have lupus and read A Vision for Lupus Global Report launched on WLD.
 

LADA Vice President Sandi Frear (left) receiving the St. Petersburg, FL WLD Proclamation from Mayor
Rick Kriseman's Assistant Marie N. Charles (right).

Lupus Agencies of NY State Advocates with the WLD Proclamation sponsored by NY Senator Charles Schumer in the State Capitol Building in Albany, NY.

Rome, NY Mayor Jacqueline M. Izzo (left) presenting the City of Rome, NY WLD Proclamation to LADA Board Member Lisabeth Iglesias in the Mayor's office.

Mayor John Bertonni (left) presenting LADA Advocate Bill Frear (right) with the Village of Endicott, NY WLD Proclamation in the Mayor's office
in Endicott, NY.

LADA Board Member Lisabeth Iglesias with the WLD Proclamation from Congressman Anthony Brindisi in his Utica, NY office.

LADA Patient Advocate Christine
Von Raesfeld (center right) receiving the WLD Proclamation sponsored by CA Congressman Rohit Khanna from his staff in the Santa Clara, CA office.

Pictured left are LADA Board Members and Looms for Lupus Founders Juana Mata (left) and Estela Mata (right) receiving the WLD Proclamation sponsored by CA State Senator Susan Rubio (center) in the CA Senate Chamber in Sacramento, CA. Pictured on the right are California Patient Advocates outside the Capitol in Sacramento.

Pictured above are California lupus advocates receiving WLD Proclamations from City of Santa Clara Mayor Lisa Gilmore and Council, Simeone Chien representing Assemblyman Kansen Chu, and Cass Langer representing Congressman Ro Khanna.

Lupus Community Exhibit at ACR Meeting

LADA sponsored the Lupus Exhibit at the ACR Annual Scientific Meeting in Chicago, IL on October 21-23, 2018 to provide awareness and promote unity in the lupus community. The booth was manned by lupus patient advocates and staff representing lupus organizations from across the country. The meeting was attended by nearly 20,000 members of the Global Rheumatology Community and gives us the opportunity to share educational materials and resources with physicians and other healthcare professionals about lupus and the various organizations. We were thrilled that this year's meeting included more patient representation than in previous years and began with a Patient Perspectives Poster Presentation session on Sunday. We appreciate the participation of the various organizations: Lupus and Allied Diseases Association, Lupus Foundation of America, Lupus Research Alliance, Lupus Society of Illinois, Lupus LA, Michigan Lupus Foundation, Lupus Chat, Looms for Lupus and More Than Lupus and the efforts of our invaluable volunteers. We will continue to provide opportunities for people with lupus to participate and make their voices heard in the healthcare and public policy arenas and across the research continuum.

Patient Perspectives Poster Presenters and Co-hosts of Lupus Chat Christele Felix, (above left) and Carlene Harrison (above right) at the ACR Meeting in Chicago. 

Lupus Booth volunteers Estela Mata, Kathleen Arntsen, Juana Mata (standing), and Christele Felix, Carlene Harrison and Hollaine Hopkins (seated).

Education Symposium

 

We partnered with the Lupus Alliance of Upstate New York (LAUNY) to sponsor Enhancing Lives by Engaging, Empowering and Elevating the Lupus Community Education Symposiums in Syracuse on May 12, 2018 and Buffalo on June 30, 2018. 

 

May is Lupus Awareness Month

 

LADA joined with the other members of the Lupus Agencies of New York State for the 10th Annual Lupus Awareness Month Recognition in the State Capitol on Wednesday, May 23, 2018. Senator Joseph Griffo and Assemblymember Fred Thiele sponsored the joint legislative resolutions.  The groups have been coming to Albany each May for the past ten years to increase public awareness of Lupus and to garner support for education and research programs and access to healthcare issues. The Lupus Agencies of NY State extend sincere appreciation to our Legislative Resolution Sponsors and our Assembly and Senate Chamber Hosts and their staff for making the annual event possible and our dedicated lupus advocates for attending.

Senator Kevin Parker (center front) and Senator Kemp Hannon (center back) with lupus advocates in the NYS Senate Chamber.

Assemblymember Fred Thiele (center) with LADA Board Member Samantha Darwak (left) and President & CEO Kathleen Arntsen (right).

Assemblymember John McDonald (front far left) and Assemblymember Fred Thiele (center front) with lupus advocates in the NYS Assembly Chamber. 

Senator Kemp Hannon (2nd left) and Senator Kevin Parker (far right) with lupus advocates Carly Harrison (left), Kathleen Arntsen (center), and Monique Gore-Massy (right).

March is Autoimmune Awareness Month

There are over 100 autoimmune conditions impacting 50 million Americans and yet these diseases remain elusive and usually require seeing multiple physicians over several years to reach a diagnosis. 

Lupus and Allied Diseases Association (LADA) joined together with advocacy partners Global Healthy Living Foundation (GHLF), National Infusion Center Association (NICA), and U.S. Pain Foundation to promote awareness during the month of March.    

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Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY  13478

 

Phone 315-829-4272
Fax 315-829-4272

Toll free 1-866-2-LUPUS-4

e-mail -  Info@LADAinc.org

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