Education and Awareness
LADA Attends BIO Patient Advocacy Summit
LADA President & CEO Kathleen Arntsen and Board Member and Patient Advocate Anne Zablotowicz attended the Biotechnology and Innovation Organization (BIO) Patient Advocacy Summit in Washington, DC on October 22-24, 2023 where they networked with fellow patient advocacy and industry stakeholders and attended advocacy sessions with expert panelists covering current policy and research issues. LADA appreciates our strong relationship with BIO and the opportunity to share our patient perspectives.
LADA Representatives Kathleen Arntsen and Anne Zablotowicz pictured with above left: BIO Vice President for External Affairs Michele Oshman; above center: Ashira Vantrees from Aimed Alliance, Adina Lasser from Alliance for Aging Research, and Kimberly Serota from Alliance for Patient Access; above right: Hazel Moran and Emma Silva from EMD Serono.
LADA Attends Amgen Stakeholder Summit
LADA President & CEO Kathleen Arntsen and Patient Advocate Dina Thachet attended Amgen’s Stakeholder Summit “Moments that Matter” in Thousand Oaks, CA on September 17-19, 2023 where they participated in collaborative listening sessions on key issues such as improving health equity, personalized medicine and improving access to care and treatments with 50 other patient organizations. LADA appreciates being invited to attend such an informative forum where there were opportunities to engage and network with fellow advocacy stakeholders.
LADA Representatives Dina Thachet and Kathleen Arntsen pictured at the Amgen Stakeholder Summit above left; with Amgen CEO Robert A. Bradway above center; with Tammie Denyse from Carrie's Touch and Linda Murokowski from Amgen above right.
LADA Attends 2023 NIAMS Coalition Meeting
LADA Board Member and Patient Advocate Anne Zablotowicz attended the National Institute of Arthritis Muskuloskeletal, and Skin (NIAMS) Coalition Meeting on September 17-18, 2023 at the NIH in Bethesda, MD where she networked with fellow coalition members and NIAMS staff and researchers. LADA is honored to be a longstanding member and active participant of the coalition.
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LADA Representative Anne Zablotowicz pictured above left with NIAMS Director Dr. Lindsey Criswell; above center with NIAMS Coalition co-chair Eryn Marchiolo, MPH, Vice President of Mission at the Rheumatology Research Foundation; and above right with NIH Public Liaison Officer Colleen Dundas, MPH at the NIAMS Coalition Meeting.
LADA Attends 2023 RNS Conference
LADA was honored to sponsor the Rheumatology Nurses Society (RNS) at their 16th Annual Conference, August 2-5, 2023 in Austin, Texas. Board Members and Patient Advocates Jane Porter and Anne Zablotowicz had a chance to interact with Rheumatology Nurses and other stakeholders from around the country at the LADA exhibit booth and at informative sessions and networking events throughout the conference. Rheumatology and infusion nurses play such a critical role in the health and well-being of persons with lupus and allied diseases. Nurses we appreciate you!
Pictured above left are LADA Representatives Anne Zablotowicz and Jane Porter at the RNS Annual Conference; pictured above center with RNS Immediate Past President Carrie Beach, BSN, RN-BC; and above right at the LADA Booth.
LADA Attends BIO Convention
LADA President & CEO Kathleen Arntsen and Board Secretary David Arntsen joined with advocates from 60 other patient advocacy organizations at the BIO International Convention hosted by the Biotechnology Innovation Organization (BIO) June 13-16, 2023 in Boston, MA. Over 16,000 people from around the world attended the conference at the Boston Convention Center. It was the 9th year in a row that LADA was invited to participate in the conference. 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.
President & CEO Kathleen Arntsen also participated as a panelist during the session “Business Critical: Building a State/Regional Advocacy Arm on June 7th while at the conference where she shared LADA’s best practices for building a state and local advocacy arm and steps to engaging with policymakers.
Pictured above left in back row: Marc Hymovitz from ACSCAN, Massachusetts State Senator Susan Moran, Massachusetts State Representative Meghan Kilcoyne, Patrick Plues from BIO, in front row: Ben Chandhok from Alnylam Pharmaceuticals, LADA President & CEO Kathleen Arntsen and moderator Kathy Sherman from Amgen during the State Advocacy Session at BIO. Pictured above center: Nicole Hemmenway from U.S. Pain Foundation, Debbie Hart from BIO NJ, and LADA Representatives Kathleen and David Arntsen. Pictured above right: Kristen Crawford from Amgen, Mary Bartlett from New York BIO, Nicole Hemmenway from U.S. Pain Foundation, and LADA Representatives Kathleen and David Arntsen.
Celebrating Lupus Awareness Month and World Lupus Day
LADA is promoting Lupus Awareness Month during May and celebrating May 10th as World Lupus Day (WLD) by sharing our daily DID You Know 31 Days of Lupus Awareness Facts on social media and participating in our Hats On For Lupus Awareness While You Brew Up Your Inner Warrior Tea /Beverage Party. Remember to follow LADA on twitter (@ladainc) and facebook (Lupus and Allied Diseases Association, Inc.) and tag us on your posts. To learn more about the #HatsOn4Lupus Awareness event click here.
In addition, LADA joined with the other members of the Lupus Agencies of New York State on May 3rd in the state capitol for the 15th Annual Lupus Awareness Month Recognition by the State Legislature. Senator Joseph Griffo and Assemblymember Fred Thiele sponsored the joint legislative resolution along with Senator Kevin Parker, Assemblyman John McDonald, and Assemblywoman Crystal Peoples-Stokes. The groups have been collaborating each May 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 their staff for making the annual event possible. We also thank our dedicated lupus advocates for helping to promote the event.
Click Here to view the Senate Chamber video presentation
Here is the 2023 Joint Resolution below as a photo or in pdf. Click Here
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Pictured above are NY State Senators Roxanne Persaud, Cordell Cleare, Joseph Griffo, Kevin Parker and Robert Jackson with Lupus Advocates in the Senate.
Pictured above are NY State Assemblywoman Marianne Buttenschon and Assemblyman Fred Thiele with Lupus Advocates in the Assembly.
May 10th is World Lupus Day
Lupus and Allied Diseases Association is honored to be a member of the World Lupus Federation (WLF) participating in the 20th annual observance of World Lupus Day (WLD) on May 10, 2023 along with 250 lupus groups in 75 countries on six continents.
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 an overview of the survey results. Click here to read the Global Survey on the Impact of Lupus on the Body's Organs from people with lupus.
Lupus 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 and Luncheon on the road again in 2022 and 2023. We partnered with the Lupus Foundation New England in Boston, Massachusetts and the Lupus Society of Illinois in Chicago, Illinois in October 2022 and the Michigan Lupus Foundation in Detroit, Michigan in April 2023 to hold our events.
The purpose of this initiative is to provide an educational program on Clinical Research Trials and Participation, Patient Empowerment, an Overview of Innovative Therapies, 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 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 is open to people with lupus and other autoimmune conditions, their loved ones, care partners, medical students, patient advocacy leaders, and sponsors. The event and luncheon were FREE but all attendees had to pre-register to attend.
To learn more about the individual programs read the information below.
We would like to recognize and thank our sponsors for their generous support.
Diamond Event Sponsor
Horizon Therapeutics
Platinum Luncheon Sponsor
Aurinia Pharmaceuticals
Biogen and UCB, Inc.
GlaxoSmithKline
Gold Program Sponsor
AbbVie
Amgen
AstraZeneca
Bristol-Myers Squibb
Janssen
Mallinckrodt Pharmaceuticals
Friend Sponsor
Kezar Life Sciences
The Boston Lupus Education Symposium was held on Sunday, October 2, 2022 at Simmons University, Linda K. Paresky Conference Center in Boston, MA with over 40 people with lupus, carepartners, sponsors, exhibitors and speakers attending.
The Chicago Lupus Education Symposium was held on Saturday, October 29, 2022 at Loyola University Chicago*
Centennial Forum - Rambler Room in Chicago, IL with over 50 people with lupus, carepartners, sponsors, exhibitors, speakers and volunteers attending.
*Neither the Lupus and Allied Diseases Association or the Lupus Society of Illinois is affiliated with Loyola University and this conference is not sponsored or co-sponsored by Loyola University.
Pictured above Boston Symposium attendees gather for a group photo. Pictured left are LADA speakers David Arntsen and Kathleen Arntsen and Kenneth Getz, Founder and Executive Director of CISCRP.
Pictured above Chicago Symposium attendees gather for a group photo. Pictured above are LSI President Charles Brummell, presenter Robert Katz, MD, and LADA speakers David Arntsen and Kathleen Arntsen.
The Detroit Lupus Education Symposium was held on Saturday, April 15, 2023 at the beautiful St. Andrews Church at
Wayne State University with 65 people with lupus, carepartners, sponsors, exhibitors, speakers and volunteers attending.
Pictured above is a group photo of the Detroit Symposium attendees and Symposium presenters, Kathleen Arntsen and Dr. Michelle Kahlenberg with Michigan Lupus Foundation Executive Director Kimberly Dimond and presenter David Arntsen.
LADA Attends CARRA Scientific Meeting
LADA Board Member and Patient Advocate Anne Zablotowicz attended the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Annual Scientific Meeting March 26-29, 2023 in New Orleans, LA. Presenters at the conference shared updates on the CARRA Registry of persons with pediatric onset rheumatic diseases. This data collection enables the evaluation of the safety and efficacy of medicines and a chance to improve treatment by identifying participants for future disease studies. Among the sessions presented was a workgroup to study Neuropsychiatric SLE and Genetics to Advance Precision Medicine in the pediatric population, which LADA supports through a research grant. LADA applauds the dedicated Pediatric Rheumatologists and staff, and the young patients and parents / care partner stakeholders who are integral to the diverse CARRA initiatives and research studies. It is inspiring as many people with lupus started showing signs of disease activity in their childhood well before their official diagnosis.
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LADA Representative Anne Zablotowicz pictured above left with Senior Director of Research Operations at CARRA Leslie Hanrahan; pictured above center with CARRA's Director of Strategic Partnerships and Patient Engagement Vincent Delgaizo; and above right is CARRA's SLE Committee's vision.
LADA Participates in 2022 ACR Annual Meeting
LADA sponsored the Lupus Community Exhibit at the American College of Rheumatology (ACR) Convergencel Scientific Meeting on November 10 - 14, 2022 to provide awareness and promote unity in the lupus community. The booth was manned by lupus patient advocates and carepartners 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 appreciate the participation of the various organizations: Lupus and Allied Diseases Association, Lupus Chat, Lupus Society of Illinois, Lupus Foundation of New England, and Lambda Sigma Sigma Lupus and the efforts of our invaluable volunteers. We will continue to provide various opportunities for people with lupus to participate and make their voices heard in the healthcare, regulatory and public policy arenas and across the research continuum by supporting their attendance at key education, advocacy and scientific meetings.
LADA Attends BIO Convention
LADA joined 65 other patient advocacy organizations at the 2022 BIO International Convention hosted by the Biotechnology Innovation Organization (BIO) June 13-16, 2022 in San Diego, California. Over 16,000 people from around the world attended the conference at the San Diego Convention Center. It was the 8th 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 left is LADA President Kathleen Arntsen, above center LADA Advocates Kathleen and David Arntsen, and above right Tiffany Westrich-Robertson from International Foundation for AiArthritis, Tyler Reagan from Neurocrine Biosciences, Kathleen Arntsen and Nicole Hemmenway from US Pain Foundation attending the BIO International Convention in San Diego.
LADA attends NICA Annual Conference
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LADA Participates in 2021 ACR Annual Meeting
LADA sponsored the Lupus Exhibit at the American College of Rheumatology (ACR) Convergence Today Virtual Scientific Meeting on November 6 - 10, 2021 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 appreciate the participation of the various organizations: Lupus and Allied Diseases Association, Lupus Chat, and Lupus Foundation of New England, and the efforts of our invaluable volunteers. We will continue to provide various opportunities for people with lupus to participate and make their voices heard in the healthcare, regulatory and public policy arenas and across the research continuum by supporting their attendance at key education, advocacy and scientific meetings.
2019 Lupus Education Symposium Road Show
Lupus and Allied Diseases Association's Enhancing Lives by Empowering the Lupus Community Education Symposium and Luncheons held in Hawaii, California and Colorado in 2019 were well attended by people with lupus and their loved ones. The purpose of the initiative was 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. The program was FREE but people were required to register to attend.
All 3 events and 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
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 Symposium
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.
Colorado Symposium
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.
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.