Lupus Research Institute Advocacy Ambassador Featured Speaker at New York Biotechnology Association Annual Meeting
The Lupus Research Institute is proud to announce that our own Advocacy Ambassador Kathleen Arntsen was a featured panel speaker at the recent New York Biotechnology Association (NYBA) 22nd Annual Meeting in New York City. NYBA supports the development and growth of New York’s life science industry, an industry committed to developing new treatments and a cure for diseases like lupus.
Kathleen discussed her personal journey with lupus as part of a panel presentation entitled Patient Perspectives: Seeking Cures, Not Just Returns.
Kathleen provided the audience with a vivid description of the life of a lupus patient.
“Living with lupus is like swimming in shark-infested waters. “The danger and uncertainty is always present and one is armed with nothing but a will to survive. We try to stay afloat while anticipating the next attack and remain ever hopeful that a rescue ship will soon appear on the horizon.”
Patient Perspectives: Seeking Cures, Not Just Returns
The panel addressed how patient groups and disease organizations such as the Lupus Research Institute are bringing a combination of advocacy, policy, and money together in a model revolutionizing industry’s investment in research and development of new drugs.
Kathleen emphasized that the kind of innovative novel research the LRI funds is the best hope for bringing the rescue ship to the aid of lupus patients.
“In late 1999 the lupus community was discouraged and disgusted with the lack of private sector research in lupus,” she related. “Patients, families, health care providers, and leading researchers came together to establish the LRI in 2000. The scientists advised the group to create a nimble organization that could unleash scientific creativity and challenge conventional thinking about this complicated and mysterious illness. Their mandate: Let science lead the way to a cure.”
Sharing the success of the LRI in following that mandate, Kathleen described, “Unlike other lupus funding organizations, the LRI is solely dedicated to novel lupus research that has the potential to drive discovery in a complex and understudied disease. The LRI redefined the scope and pace of progress in lupus.”
Kathleen`s presentation let the numbers speak for themselves when reporting the success of the LRI approach.
- $40 million has generated $130 million in follow-up funding including $117 million from the NIH
- 140 grants awarded to date
- 84% of investigators were successful in proving novel hypotheses, published their results and obtained major follow-up funding to move their ideas from bench to bedside.
- 20% of LRI grant holders have embarked on pathways translating novel research to the clinic. Several patents for new biomarkers and therapeutic approaches are already filed or approved and biopharmaceutical companies have licensed these technologies and are developing new therapeutic agents.
In addition to her work with the LRI, Kathleen is president/CEO of one of LRI most active Patient Coalition member organizations, Lupus Foundation of Mid and Northern NY and has been a regional and national advocate for lupus and autoimmune diseases. She has provided public witness testimony before the U.S. Food and Drug Administration, Congress, NYS Legislature, and many other federal and state government agencies and committees.
“We are very proud of Kathleen for her effectiveness as a strong advocate on behalf of all lupus patients throughout New York State and the entire country,” noted LRI president Margaret Dowd. She is a tremendous asset to the LRI National Coalition of patient advocates and truly one of the most eloquent voices of the lupus community.”