Spotlight On: Kristen Hood, NephCure’s Director of Clinical Outreach September 13, 2019 by Kylie Karley With a diverse background in medicine, our new Director of Clinical Outreach, Kristen Hood, will bring more to NephCure Kidney International than just her 15 years of nursing knowledge. Kristen is a mother, and her 10-year-old son, Logan, was diagnosed with Nephrotic Syndrome back in 2016. Kristen’s unique personal and professional experience with these glomerular diseases gives her invaluable insight on how to engage, educate, and mobilize patients into clinical trials through KidneyHealthGateway.com. If her name sounds familiar, it’s because Kristen has been an active volunteer for NephCure for over 3 years! Learn more about her and her family’s story and see what she’s looking forward to during her time with our organization. As the Director of Clinical Outreach, what does your role consist of at NephCure? Professionally, I have been a nurse for over 15 years. In my position with NephCure, I will be using my nursing and medical knowledge to engage, educate, and mobilize patients into clinical trials through Kidney Health Gateway. Can you tell us a little about your family’s story and how you became involved with NephCure in the first place? Our son Logan was diagnosed with Nephrotic Syndrome in July 2016. He had been ill for several months. He had 2 misdiagnoses, then while on vacation became acutely ill and was rushed to ER. When we received Logan’s diagnosis, we began scouring the internet for information and support. NephCure was the first website that popped up. I recall while registering on the NephCure website, a friend from college reached out and asked if she could share my information with a mom who had a daughter with a similar diagnosis. Turns out, she was referring to NephCure’s own Kelly Helm! NephCure and Kelly Helm provided more support and education to our family than we ever imagined. How has the shift from volunteer to full-time employee been for you? This shift from volunteer to full-time employee has been great! I have been an active volunteer with NephCure for 3 years, so I have gotten to know quite a few of the staff through different events: Advocacy Day, CDTAC, NLS, walks, etc. Transitioning to an employee, the staff have been very welcoming and seem excited for their new team member! I feel blessed to work with the most amazing people. You can tell that everyone who works at NephCure truly believes in and works toward the mission and goals of the organization. What are you most looking forward to in your position? I am really looking forward to learning about our patients that have registered into KidneyHealthGateway.com. I look forward to finding out what they need and how I can help them make the decision to enter one of the listed clinical trials. I want my work to be purposeful and meaningful by bringing about better treatments, which eventually will be accessible to all. What do you hope to share with others during your time at NephCure? What I hope to share with others is the power and promise we have at our fingertips for better treatments, and possibly a cure, through Kidney Health Gateway clinical trials. I hope to educate and empower our patients and patient families to reach out and participate in a clinical trial. Our patients and families hold the promise for a better future…and I want them to know how important and appreciated they are, as well as supported. How has NephCure impacted you and your family? As a patient family, NephCure has given our family the opportunity to move away from a devastating diagnosis and the looming unknown of Logan’s future. NephCure gave us an opportunity to actively change our focus through advocacy and volunteerism. We did not want to sit around and wait to see what would happen next…rather, NephCure gave us active ways to promote hope, positivity, and contribute to a better future for Logan and others like him. With NephCure’s help, we turned Logan’s devastating diagnosis into purposeful action for a better and brighter future. Why is now so important for individuals to get involved with NephCure and clinical trials, specifically? We have, at our fingertips, the world’s most renowned and respected nephrologists and researchers, working hard to find better treatments—and maybe a cure! —to these rare protein-spilling diseases that affect the patients and caregivers of the NephCure community. We have met with the top members of the FDA; we have leveraged our weight on behalf of the research and clinical trials for our patients and families. We now need them to engage and participate. The future of new medications, better treatments, and better quality of life is in their hands. What is some advice you would give to parents of a recently diagnosed child? My best advice is to take everything one day at a time. When faced with a devastating diagnosis or situation, it is easy for us to constantly be looking ahead into the unknown. We know there will be inevitable challenges, but I would caution looking too far ahead. Keep perspective to a smaller scale and initially, just get through the days, one by one. I would also encourage parents to not forget to take care of themselves, physically and mentally. Take daily walks outside, pray, meditate, and eat healthy. You must take care of yourself too. When you’re not at work, what can you usually be found doing? My family loves traveling, fishing, camping, and playing sports. All of our kids play sports, so their athletic schedules keep us very busy! I am also in a doctorate program, so I am very busy with my own schoolwork!