Meet Our Incredible VPPRN Lead Patient-Partners
“Our Patient Research Partners in the VPPRN are great! They bring to our research projects both their experiences as patients with vasculitis and their own other life skills. Our patients work with investigators at each stage of a research project from choosing the studies, to planning the work, to interpreting the data, and the getting the word out about the final results. I not only enjoy working with patients in research but know their input makes our studies better.” – Peter A. Merkel, MD, MPH
The Vasculitis Patient-Powered Research Network (VPPRN) is a partnership of patients, families, investigators and researchers, with representation and shared leadership. Central to the VPPRN’s overall governance structure is the theme of patient leadership, engagement, and group consensus throughout all aspects of Network design, implementation and governance. The VPPRN fully embraces the belief that patients and families should be full partners with investigators and clinicians in research and care.
The VPPRN fosters a group culture in which stakeholders are empowered with responsibility over Network activities, and are given the tools to maximally contribute to the groups’ goals. Although, patients, clinicians, investigators and other stakeholders may each play different roles at times of research development, and members have different expertise, all views are important and are considered.
The VPPRN embraces a leadership model for each study that includes a lead patient-partner working along side the principal investigator.
We proudly introduce our current lead patient-partners for the VPPRN studies.
Our Lead Patient-Partners
Jenn Gordon, PhD
Co-Principal Investigator Patient-Partner VPPRN and Co-Lead Patient-Partner, EGPA Registry
When I was diagnosed with EGPA in 2014, I tried to absorb everything I could about EGPA and vasculitis. Even though I have a background in science, I had never heard of vasculitis, so I had A LOT to learn. As I combed through information online, the value of the Vasculitis Foundation was immediately clear to me. The VF plays a central role in providing a trusted source of knowledge, partnering with a network of clinician experts, and supporting patients and their caregivers. I knew I wanted to be a part of this community and do everything I can to support the VF. The VPPRN, in particular, takes the power of the VF to the next level by providing a unique platform for conducting research studies across all forms of vasculitis. Participating in the VPPRN gives me an incredible opportunity to put my skills as a biomedical researcher to work. Providing the patient perspective will help guide research in vasculitis toward areas that are a priority for patients and their families.
Advisory Team and Past Co-Principal Investigator Patient-Partner VPPRN
I was diagnosed with GPA- then Wegener’s- in 1995. The VF then served as a much-needed source of support and resources. With the creation of the Research Committee, the VF took first, important steps to fund studies in many types of vasculitis. Now, with the VPPRN, the partnership of committed patients and our dedicated, talented scientists and clinicians in research activities is a major step forward for all. The breadth and productivity of the VPPRN’s work thus far is most heartening. I am honored to have served as VPPRN co-principal investigator with Dr. Merkel. Sharing vasculitis research ideas and goals and developing studies to address them is vital and most welcome.
Lead Patient-Partner, VascStrong
My name is John Stadler, I live with Vasculitis and therefore, I am very supportive of research that furthers the knowledge of the disease along with treatment options. My choice to lead the VascStrong Study was quite easy. I personally experience the effects of vasculitis in my life. I have limitations from the disease that affect my daily activities and my ability to live an active life. I am very hopeful this study will uncover comprehensive information on frailty that leads to the minimization of frailty and treatments that reduce the impact of frailty on patients with vasculitis.
Lead Patient-Partner, OPTIONS Study
I decided to get involved in VPPRN research for two reasons. First, after having a “crash and burn” experience with GPA, and discovering that no one knew the cause and there was no cure; I felt that I owed it to my family to do what I could to help find effective treatments and, hopefully, someday, a cure. The second reason I wanted to work with VPPRN is because I had a bad experience with a clinic when I was trying to volunteer for a study. It was that experience which convinced me that patients need to be active participants in research design and execution.
Lead Patient-Partner, AAV Response Criteria Delphi
As a patient with vasculitis for over 17 years, I have spent half my life with this illness. With the diagnosis comes trials and tribulations, as can be expected, however one of the most valuable and important aspects of this journey has been my caring and supportive health care team. I have been very lucky to have received quality care from a wonderful group of health care professionals. Something that I have valued most deeply is the ability to have productive conversations with my doctors and feel my voice is heard within the medical process. I want to be a voice where others may not be heard. I want to ensure the patient voice is a part of the research process in order for there to be effective and beneficial outcomes for all patients, both old, and new. My role with the VPPRN research allows me to do just that. I am very thankful to be a part of this community!
Stacey Ivits, MSW
Co-Lead Patient-Partner, EGPA Registry
Hi, I’m Stacey. I was diagnosed with EGPA at the age of 17 after experiencing many different puzzling symptoms throughout my adolescence including pericarditis and serious lung and GI involvement. Receiving my diagnosis was a relief. And then the journey to finding effective treatment began. I felt lucky that I responded to medications and I was able to continue on with my educational and life goals. Now in my mid-30’s, I have my Masters in Social Work and run my own Private Practice, counselling folks living with chronic physical or mental health challenges. I am married and have two school-aged children and live in Guelph, Ontario Canada. Over the past twenty years living with chronic illness I have experienced some flares, but overall am managing quite well. I am excited to be involved with the EGPA Registry so that I can collaborate with patients and clinicians on research that matters to folks living with EGPA.
Lead Patient-Partner, Neurologic Involvement in ANCA-Associated Vasculitis
After I was diagnosed with EGPA in 2019, I experienced a deep sense of uncertainty. It wasn’t clear if I would recover the full use of my right leg or be strong enough to return to work. One important source of hope was the Vasculitis Foundation. Along with excellent care from doctors at UCLA, I leaned upon the VF’s educational files and patient support videos on the VF website. I quickly became curious about opportunities in Vasculitis research. The VF website led me right to the Vasculitis Patient-Powered Research Network (VPPRN). I felt empowered by the fact that I could contribute the data of my Vasculitis case into a world-wide registry. As I studied the past and ongoing research projects, I was confident that I could contribute more that my data to future projects. I had found my voice as a Vasculitis patient and was eager to do more. Becoming a Patient Research Partner (PRP) was absolutely the right fit for me. I can use the lingering artifacts of my neurologic involvement to collaborate with the doctors in the design of data collection for similar patients.