News and Events

LADA donates another $100,000 to the Lupus Research Alliance!

The Lupus and Allied Diseases Association presented their annual research donation to the Lupus Research Alliance for $100,000 at the August 22nd Lupus Charity Golf Classic in support of innovative lupus and autoimmune research.  This brings us to a total of $591,000 that we have donated to support lupus research at the Lupus Research Alliance over the past 18 years, and an amazing $864,000 in lupus research funding overall since 1990. 

Lupus Research Alliance representatives Ian Kirkman, Jonathan Marks, Al Roy, and Dorey Neilinger receiving the LRA's annual research donation from LADA President & CEO Kathleen Arntsen and Secretary David Arntsen.

LADA President & CEO Presents at Lupus International Congress

Lupus and Allied Diseases Association President & CEO Kathleen Arntsen delivered a dynamic and informative presentation during the 13th International Lupus Congress urging people with lupus and their loved ones to become empowered and effective personal and public advocates.  The goal of the session was for attendees to realize the positive impact of their participation in healthcare and research advocacy efforts.  An overview of self-advocacy that included patient-centric care, stressing the importance of being engaged in one's own medical care to improve access and quality of life was also provided.  Inspirational bits of Kathleen's personal lupus journey, road to empowerment, and advocacy experiences were woven throughout the presentation. Attendees came prepared to step up and shared their advocacy program initiatives in an interactive audience exercise at the end of the session.


"It was an honor to lead an interactive session on advocacy at the Lupus 2019 Meeting where lupus advocates from around the world shared their amazing efforts to improve lives,” commented Kathleen.  “I am proud to be an advocate in the lupus community and stand alongside these incredible warriors.”  Fighting for decades to make sure that the patient voice is recognized in the research, healthcare, regulatory and public policy arenas, Kathleen advises others on how to take part in the advocacy process.  “The wonderful thing about being an advocate is that you can make your voice heard from anyplace, including the comfort of your home and you can even be in your sweats or pajamas.  Each of you has the power and the passion to make a difference through advocacy.”

The Lupus 2019 Meeting held in San Francisco on April 5-8, 2019 was the 13th International Congress on Systemic Lupus Erythematosus and was an opportunity for researchers, clinicians, healthcare providers, patient advocates, organization leaders and people with lupus to learn about the latest lupus research while interacting with the global lupus community.

 

Kathleen’s presentation was entitled, “The Power of Advocacy to Improve Lives” and was part of a session called The Patient Voice.  Besides allowing international patient advocates the opportunity to passionately share their advocacy initiatives, the session included an interactive word cloud representative of the attendees’ reactions to the program. 

 

The session was mentioned as a favorite in the Congress organizers' closing remarks.

LADA President & CEO Kathleen Arntsen (center) with global lupus advocates.

The wonderful thing about being an advocate is that you can make your voice heard from the comfort of your home and you can even be in your sweats or pajamas.

Lupus 2019 Patient Voice Word Cloud

Lupus warriors from around the world at the Lupus 2019 International Meeting.

 

LADA Presents 2019 Research Donation

 

Lupus and Allied Diseases Association President & CEO Kathleen Arntsen presented $100,000 to Lupus Foundation of America President & CEO Steve Gibson on March 4, 2019 at the LFA's Advocacy Summit Rising Voices in Washington, DC following a luncheon presentation by Dr. Gary Gilkeson from the Medical University of South Carolina on his groundbreaking mesenchymal stem cell research in lupus.  Kathleen stated, "I am excited to present this research donation check in the amount of $100,000.00 to the Lupus Foundation of America for your Pediatric Research and Mesenchymal Stem Cell Research Programs with $50,000.00 applied to support each one.  This contribution validates our ongoing devotion to your research program and our continuing commitment to invest in the most promising lupus research in the nation.  We have now donated $764,000.00 to lupus research to date!"

LADA President & CEO Kathleen Arntsen (left) presents  $100,000 to Dr. Gary Gilkeson from the Medical University of South Carolina (center) and Lupus Foundation of America President & CEO Steve Gibson (right) during the LFA Advocacy Summit Luncheon. 

Lupus advocates from across the country attended the LFA Advocacy Summit as LADA Representatives to raise their voices to Congress on lupus research and education programs. Pictured above from left to right are: Whitney Carter, Estela Mata, Juana Mata, Kathleen Arntsen, Christine Von Raesfeld, Amanda Greene, Jeffrey Anders, Carlene Harrison and Tiffany Peterson.

Lupus NYS Taxpayer Gifts is a Reality

Following 10 years of advocacy efforts from the Lupus Agencies of NYS and support from our legislative champions Assemblywoman Crystal Peoples-Stokes and Senator Kevin Parker, we are thrilled to announce that the Lupus Education & Prevention Fund is now listed under Voluntary Contributions on the 2018 NYS Tax Return. Contributions to this fund will be used to support NYS lupus education, prevention and awareness program grants. If you are a New Yorker, please support this effort by checking the Lupus Fund on your return and share with others. It is an option whether filing by paper, electronically or through your accountant, but you must inform them.

LADA Presents at FDA Public Meeting

On September 4, 2018, Lupus and Allied Diseases Association President & CEO Kathleen Arntsen presented comments at the U.S. Food and Drug Administration (FDA) public hearing on Facilitating Competition and Innovation in the Biological Products Marketplace that focused on the Biosimilar Action Plan announced by FDA Commissioner Scott Gottlieb in July.
 

The action plan addressed 4 key areas intended to improve biosimilar competition:

  • Improving the efficiency of the biosimilar and interchangeable product development and approval process;

  • Maximizing scientific and regulatory clarity for the biosimilar product development community;

  • Developing effective communications to improve understanding of biosimilars among patients, providers, and payers;

  • Supporting market competition by reducing gaming of FDA requirements or other attempts to unfairly delay market competition to follow-on products.
     

Kathleen gave an eight-minute presentation as both an organization leader and a patient advocate followed by a three-minute Q&A period during which she answered questions from the FDA panel.

Key themes of her presentation included:
 

  • The importance of not sacrificing quality, safety, or efficacy standards in biosimilar approvals by the FDA;

  • The anticipation among the patient advocate and provider communities about biosimilars offering new treatment choices and reduced costs;

  • The consideration of the “atypical” patient when establishing biosimilar regulatory guidelines;

  • The expectation that biosimilar policies must be science-based and patient-focused;

  • The importance of leaving treatment decisions, including the decision to switch medicines, to the individual and their healthcare team.
     

On September 21, 2018 submitted written comments to FDA as a follow-up to September 4th Public Hearing.

The purpose of the hearing and the request for comments, is to seek input on how the FDA can achieve the following goals:
 

  • Facilitate the efficient development of biosimilar and interchangeable products using state-of-the-art science;

  • Develop information resources, as well as scientific or regulatory tools, to streamline the development of biosimilar and interchangeable products;

  • Enhance the efficiency of FDA review of marketing applications for biosimilar and interchangeable products;

  • Provide additional scientific or regulatory clarity regarding FDA’s regulation of biological products, including FDA’s review and approval of marketing applications for biological products;

  • Increase healthcare provider, patient, and payer understanding of biological products, including biosimilar and interchangeable products; and

  • Support market competition by addressing attempts to game FDA requirements or otherwise delay market entry of competing biological products.

Biosimilars Resources


Courtesy of Creaky Joints / Global Healthy Living Foundation
A Patient's Guide to Understanding Biosimilars

Courtesy of the Biosimilars Roundtable-
Science-Based Resource on the Basic Facts About Biosimilars

 

 

LADA donates $100,000 to the Lupus Research Alliance!

The Lupus and Allied Diseases Association was delighted to present their annual research donation to the Lupus Research Alliance for $100,000 this year at the August 23rd Charity Golf Classic in support of innovative lupus research.  "This brings us to a total of $491,000 that we have donated to support lupus research over the past 17 years, and an amazing $664,000 in lupus research funding overall since 1990," said President/CEO Kathleen Arntsen. She added that this was "not too shabby for an all volunteer, passion-driven, and patient-led organization run out of our home." Albert Roy from the Lupus Research Alliance thanked LADA for their amazing support, noting that this was an event that makes a tremendous difference in supporting lupus research, and that he is extremely proud of the work that has been accomplished in his home town of Verona, NY.

LADA Supports LFA Research Program

Lupus and Allied Diseases Association President & CEO 

Kathleen Arntsen (left) presents our 2018 Annual Research 
Donation of $100,000 to Lupus Foundation of America CEO 
Sandra Raymond (right) on March 14, 2018 in front of LADA's 
plaque on the LFA's donor wall. The grant is to fund pediatric 
lupus and mesenchymal stem cell research. We have now 
donated $125,000 to the LFA in the past two years for research.

Lupus Patient Voices Heard

 

Top decision makers at the U.S. Food and Drug Administration(FDA) heard from over 550 people impacted by lupus on September 25, 2017 at an unprecedented in-person meeting and live webcast about what it's really like to live with the disease and what they need most from new treatments. The Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance organized the meeting as part of the FDA's externally-led Patient-Focused Drug Development (PFDD) Initiative. The PFDD was created by the FDA to allow regulators to better understand the perspectives of people with disease such as lupus so they can better assess the benefits and risks of drugs under review.  For more information visit  LupusPFDD.org

The Lupus PFDD Community at the Pre-Meeting Dinner on September 24, 2017

Lupus Community Representative Kathleen Arntsen had the honor of giving Opening Remarks at the Lupus PFDD Meeting on behalf of the community.

LADA Board Secretary David Arntsen, Attendee Lorenzo Hall, and LADA President & CEO Kathleen Arntsen.

LADA Representatives Tiffany Westrich-Robertson,  Lisabeth Iglesias, and Kaamilah Gilyard at the Meeting.

Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY  13478

 

Phone 315-829-4272
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Toll free 1-866-2-LUPUS-4

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