The First Collaborative Conference a Great Success
The Lupus Research Alliance and Lupus Foundation New England recently co-hosted the Advancing Lupus Care Through Research and Advocacy Conference in Boston. This was the first joint event for the newly merged Lupus Research Alliance, and its success demonstrates the strength of collaboration! Attendees left with hope for better treatments and a passion for action as speakers reported news in research and advocacy. Please click on pictures of speakers for video.
The Progress and the Promise of Lupus Research and Advocacy
Can a single protein treat lupus?
Dr. Maria Kontaridis, Director of the Basic Cardiovascular Research Program, Beth Israel Deaconess Medical Center
Before presenting her research, Dr. Kontaridis inspired the entire room as she shared that her mother’s struggles with lupus is why she devotes her career to researching the disease. She reviewed the many difficult challenges of living with lupus – its many symptoms, life-threatening complications and insufficient treatment options. Her work funded by the Lupus Research Alliance aims to help treat and even prevent damage to the spleen, skin and kidneys by putting the brakes on one specific protein, SHP2.
Why do Lupus Clinical Trials Fail?
Dr. George Tsokos, Chief, Division of Rheumatology, Beth Israel Deaconess Medical Center
One of the foremost thought leaders in lupus research, Dr. Tsokos shared his theories of why clinical trials have often failed in the past and how studies might be designed differently to overcome common challenges. For instance, studies need to account for the many variables the disease presents, not only from patient to patient but even in each individual over the course of one study.
New Clinical Trials Starting Up
Diane Gross, National Director of Advocacy and Programs, Lupus Research Alliance
To improve lupus treatment and overcome issues in trial design such as those raised by Dr. Tsokos, the Lupus Research Alliance launched our own Lupus Clinical Investigator Network (LuCIN). We are very excited to share that our first clinical trials are starting this month! With 59 academic research centers in major cities throughout North America, LuCIN provides a framework to quickly and cost-effectively test existing medications for use in lupus and potential new treatments as well as tools to monitor the disease. Click here to learn more.
Advocacy Brings the Voice of the People to Legislators
Your Advocacy Makes a Difference
Massachusetts State Representative Kimberly N. Ferguson
Representative Ferguson emphasized that to improve care for people with lupus, legislators need to hear from the community about why research and good healthcare is so important. “The squeaky wheel really does get the grease. Thousands of bills are filed each year and we need you to tell us which are most critical to you!”
Building Strong Advocacy Skills
Heather Carroll, LSWA, NCDP, NCDM, Manager of Public Policy, MA/ NH Chapter, Alzheimer’s Association
Ms. Carroll recommends telling your story with emotion. “Facts don’t change perception. But painting a picture of what life was like before and after lupus moves legislators as people and makes them remember you!”
The Lupus Research Alliance hosted this conference in collaboration with the Lupus Foundation New England because research and advocacy are the progress and the promise for people with lupus – the research to develop new treatments and the advocacy to make sure people get the best care they deserve!
THANKS TO EMD SERONO FOR SUPPORTING THIS CONFERENCE