As a patient parent in Illinois, Cheryl LaBanco, is constantly raising awareness for Nephrotic Syndrome and FSGS. She is passionate about connecting with other local families and being a support system for those battling the same disease as her daughter. Cheryl is the Advocacy Lead and Local Walk Team Chair in her region. Learn more about her family’s story and her efforts to build a sense of community around this rare disease.

Tell us about your family’s connection to Nephrotic Syndrome and FSGS.

My daughter, Nora, was diagnosed with Nephrotic Syndrome on January 31, 2017 at the age of three. We were hopeful she would respond to the medications and eventually outgrow this condition. After several weeks, she still was not responding to the first line treatment so a biopsy was performed to see if she had a more serious form, called FSGS (focal segmental glomerulosclerosis). FSGS scars the kidneys and may lead to kidney failure. Unfortunately the biopsy results confirmed the FSGS diagnosis. She will not outgrow this disease and will have to live with it the rest of her life. There is currently no cure and treating the disease can be difficult and harsh. The high dose steroids left Nora with cataracts, but fortunately, Nora has been lucky overall. She was able to reach a remission by combining an immunosuppressant and blood pressure medication. She is thriving and enjoys playing piano, softball and soccer.

How did you first get involved with NephCure?

We found NephCure through research after Nora’s initial diagnosis. NephCure’s Kelly Helm has been such a great resource for information and support. We are so thankful for the NephCure community.

What are the goals you are setting for yourself/your region?

Our goals are to get more people involved and raise awareness. We want our daughter to know that she is never fighting alone and always has a team supporting her. We hope to continue to support new families and provide resources.

How will these goals make an impact on disease awareness?

We’ve had many people reach out to us simply by searching Nephrotic Syndrome or FSGS. The more we get our story out there, the more people know about the disease along with what resources are available.

What is the favorite part of your walk that you missed being virtual this year?

Our family’s favorite part of the walk is when the other local families share their stories. Some are happy, some are not so happy, but all help build a sense of community and purpose and helps us focus on raising funds to hopefully one day cure Nephrotic Syndrome and FSGS. After Nora’s diagnosis we felt very alone, so it is nice to have other families to connect with.

What surprised you about participating in NephCure’s On the Move virtual challenge?

Cheryl’s daughter, Nora, who suffers from FSGS.

The ability to still have a team behind us supporting us was amazing. Normally we have a good turnout for the walk so we weren’t sure what to expect moving to virtual. We are still trying to find ways to raise funds for NephCure, even without our in-person event.

Why is it so important for you to get involved with NephCure and our mission?

It is important to us to be involved with NephCure because it is one of the only organizations working to find treatments and a cure for Nephrotic Syndrome and FSGS. We want our daughter to have safe and effective treatment until there one day is a cure. We also find it important to be involved with NephCure because it has allowed us to show our daughters that in the face of adversity you can chose to sit on the sidelines and hope or work together with others that have to the same goal to make the world a better place.

To find your local NephCure Community and to learn more about volunteer opportunities, click here. 

Kara and her son, Christian.

Kara Jones is a patient parent in the Bay Area, her son suffers from Nephrotic Syndrome. She has been a dedicated NephCure volunteer for over 10 years, doing everything from supporting newly diagnosed families to creating the Silicon Valley Pig Jig event! You can connect with Kara directly at siliconvalleypigjig@gmail.com.

What’s your personal connection to NephCure?

I am connected to NephCure as a volunteer — I’m the Northern California Regional Leader and the Co-Chair of the Silicon Valley Pig Jig. I first became involved with NephCure because my son, Christian, was diagnosed with Nephrotic Syndrome in 2002. I started volunteering with the organization in 2009.

Why do you volunteer with NephCure?

I continue to volunteer with NephCure to bring hope to my son and to all those that suffer from protein-spilling kidney diseases. Volunteering has become a great job for me because I feel like I am making a difference. I hope that through my work with NephCure, I will inspire my kids to get involved and work to help others through volunteering.

What projects are you working on right now? How do they make you feel?

Both of my roles (Co-Chair of the Silicon Valley Pig Jig and the Northern California Regional Leader) keep me involved in the community. Volunteering makes me feel engaged, proud, and, at times, stressed… but in a good way!

NephCure is local to you. To learn more and get involved within your regional volunteer community, please click here. 

Christopher Windisch is an FSGS patient living in the Southern California area. His leadership has helped secure not only a great sense of support and friendship within the local kidney community, but his ingenuity and creativity constantly pushes him to think about what’s next. Christopher sits on NephCure’s Board of Directors. You can contact him directly at socal@nephcurevolunteer.org.

What’s your personal connection to NephCure?

I was diagnosed with FSGS myself, and I first became involved with the organization in 2010. I  sponsored walks in my area at first.

What makes you committed to volunteering with NephCure?

I have a constant hope that we will one day find new therapies. I also hope to leverage my leadership to build a sustainable NephCure community in the Southern California area.

Chris, his wife, and their two boys.

What projects are you working on right now?

I’m mainly focusing on fundraising at the moment. I sit on NephCure’s Board of Directors so I am also involved with things there as well. I always feel like I should be doing more!

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here.

Meet Dallas Regional Leader, Tiffany Lievanos whose son suffers from Minimal Change Disease. Learn how she is working to help kidney kids understand the importance of their diet and how she is empowering other volunteers through the local events in her community. You can connect directly with Tiffany at nephcuredallas@nephcurevolunteer.org.

What’s your personal connection to NephCure?

My now 3 year old son, Owen, was diagnosed with Nephrotic Syndrome/MCD two years ago. I was searching for answers and more information about the rare disease that shook my world. I came across a Facebook group for parents of kids with Nephrotic Syndrome and several families pointed me to NephCure. I reached out and quickly became a part of the NephCure family. I started listening in on calls and once I felt comfortable, I started getting more involved. Before I knew it I was leading the NephCure community here in Dallas. It has been such a joy to lead, follow, and connect with other families through NephCure.

Why do you volunteer with NephCure?

I volunteer with NephCure because it makes me feel like I am being proactive in my son’s fight against kidney disease. When it comes to living with a rare disease, there are so many unknowns and that constant feeling of “I have to do something” from a parent’s point of view. We channel a sense of a protective nature in order to protect our child from this disease and the course of treatments that comes with it. I suppose it’s the mama bear in me that wants a little control—a little control that can certainly go along way as we make strides in awareness and better treatments.

When I started volunteering it pulled me out of a dark place of feeling alone and unheard. Volunteering was my outlet, a chance to be a voice, to create a hope for other patient families, and to be the support that I once needed and still need to this day. What keeps me committed, other than the fact that I won’t stop until there is a cure for my son, is the empowerment and love that comes with it and shines through it!

Volunteering was a big part of my upbringing and the impact that it had on me as a child which was making a difference in other people’s lives has never left me. I love to help others! Being a part of the NephCure family is such a gift to me and my own family. Being a NephCure leader is a superpower that I know I can utilize and make a difference!

Tiffany and her son, Owen.

What projects are you working on right now? How do they make you feel?

I am currently working on a couple projects at the moment. While community development is my main focus, I have started working on sub-projects to capture my patient families engagement and hope to provide the families and kidney kids with supportive tools that bring us all together as a community.

We recently launched Kooking Kidney Friendly with Keyaira and Sous Chefs a kids virtual cooking class. I hope this becomes a new way for patient families to share low sodium recipes with each other and a fun way to get our kidney kids included in our community. I feel like its important for our kids to grow up knowing and truly understanding their dietary needs, so that they can make conscious meal choices themselves and feel good about it!

Looking ahead, I have a Dallas Pig Jig scheduled for October 2021, and currently brainstorming a formal dinner party for early 2021 should Covid allow. Planning these events makes me feel productive. Event planning has always been something I have enjoyed and knowing its to make a difference in my child’s future makes it all the more empowering.

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here. 

Kevin Mott is an FSGS patient living in the Chicago area. Early on, he had a tough time finding doctors who would take his symptoms seriously. He saw four medical professionals before finding his nephrologist who diagnosed him properly. Kevin has also received a kidney transplant in 2017. He is a member of NephCure’s Board of Directors. You can connect directly with Kevin at illinois@nephcurevolunteer.org.

What’s your personal connection to NephCure?

I discovered the NephCure message board after my FSGS diagnosis years ago. I found it to be a helpful source of information. After some time volunteering with the organization, I was invited to sit on the Board of Directors.

Why do you volunteer with NephCure?

I volunteer with NephCure because I want to be supportive of the entire community dealing with rare kidney diseases—patients, parents, family, loved ones, doctors, caregivers, researchers, etc. I want to do what I can to help others on this journey have positive outcomes.

Kevin and his kidney donor.

What projects are you working on right now?

Currently, I am scheduled to speak to two groups whom I would not have met without being involved with NephCure. In particular, we are discussing issues of diversity and inclusion as it relates to the experience of dealing with rare kidney disease. It makes me very proud to advocate for all patients, but especially African American men who are disproportionately affected.

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here. 

Juli Millas is an FSGS patient living in the Central Florida area, who was first diagnosed in July 2002. She has built a strong sense of community within her region and is passionate about supporting others with rare protein-spilling kidney diseases. While she typically meets up with other local families at Tampa Pig Jig every year, she’s getting creative and adapting due to the pandemic cancelling the 2020 event. Learn what she has planned instead for her community!

What’s your personal connection to NephCure?

I discovered NephCure about seven years ago after attending the Tampa Pig Jig. As an FSGS patient, I couldn’t believe it; I had found a community of people just like me that I had no idea existed! It was nirvana! I found my tribe! When NephCure was looking for volunteers, I knew I had to get involved and I jumped at the opportunity to be a part of them. Being the patient engagement and support volunteer, as well as the regional leader, for Central Florida brings me such joy, pride and satisfaction. I know that I’m a part of something that is making a difference for Nephrotic Syndrome patients.

Why do you volunteer with NephCure?

Juli and other Nephrotic Syndrome families at Tampa Pig Jig.

I’m committed to volunteering for NephCure because I don’t want anyone with Nephrotic Syndrome to ever feel as desperate, lonely, and isolated as I did when I first got sick. I want everyone to know that NephCure is here for them with information, support, and most of all community!

What projects are you working on right now?

The two projects I’m currently working on came to fruition because of the Tampa Pig Jig being cancelled due to COVID-19 this year. Pig Jig is a huge fundraiser for NephCure and it’s a place where patient and patient families meet up every year. It just made sense to do a picnic and fundraiser. So, I am planning a one for the patients and patient families who normally meet up at Pig Jig. And since the folks at Pig Jig will match our donations up to $100,000, I am doing a small fundraiser and I am calling it “The Pig Jig Initiative.”

In recent years, we have seen Patient-Centered Outcomes, also known as Patient-Reported Outcomes (PROs), be implemented more regularly, specifically in the drug development and approval process. In fact, the Food and Drug Administration (FDA) created a Patient-Focused Drug Development Program specifically aimed at learning about how diseases impact patients’ lives and what an ideal treatment would look like from both patient and caregivers’ point of view. NephCure and our Voice of Patient volunteers continually invest their time to participate in various PRO projects, including Externally-Led Patient-Focused Drug Development Meetings with the FDA, patient and caregiver interviews, panels, and advisory boards with industry partners. These projects have led outside stakeholders towards developing deeper insight into patient priorities and have even played a part in making clinical trial protocols more patient-friendly.

Through daily interactions with glomerular disease patients and caregivers, NephCure consistently sees one very concerning trend. Patients don’t always understand, and many nephrologists aren’t consistently explaining, the correlation between proteinuria and decreased kidney function. The article in the May 2020 edition of the Clinical Journal of the American Society of Nephrology, “Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers” clearly confirms this concern. The top 3 most important outcomes among patients include:

1. Kidney function
2. Mortality
3. The need for dialysis or kidney transplant.

However, patients’ consideration of proteinuria ranks twenty-third in priority.

Over time, chronic proteinuria leads to kidney failure.^{1, 2} Proteinuria results from a dysfunction in the filtering units of the kidney. If a medication can treat that dysfunction, protein spilling into the urine will stop and the filtering units of the kidney (or glomeruli) will remain healthy. However, if protein continues to spill, the glomeruli will begin to scar, causing permanent damage and eventually a reduction in kidney function.

In our professional capacity here at NephCure, the “home” for all individuals who are affected by primary protein-spilling kidney diseases, we have heard too many firsthand accounts of adult patients who have been diagnosed with glomerular disease and whose nephrologist does not treat the proteinuria. Instead, tragically, these patients’ labs are monitored once or twice a year, and they are told to come back when it’s time for dialysis and/or transplant.

NephCure is working to change this practice by educating both the nephrology community and patient families that the number one treatment goal of any glomerular disease should be to stop proteinuria or reduce it as much as possible, which will in turn slow down the progression of the kidney disease and hopefully, in some cases, prevent the need for dialysis and/or transplant.

To that end, we have developed a new patient-focused brochure aimed at educating newly-diagnosed patients and families about the importance of reducing proteinuria in order to maintain their kidney function. We are seeking a collaboration with the broader nephrology community to distribute these at point of care and help NephCure provide support and resources to the primary glomerular disease population.

Kelly Helm, Assistant Director, Patient Advocacy

If you are interested in supporting us in this endeavor, you can request patient materials here. Thank you for your interest in helping us reduce proteinuria, save kidneys, and save lives.

Kelly Helm
Assistant Director, Patient Advocacy

¹ Troost JP, Trachtman H, Spino C, et al. Proteinuria Reduction and Kidney Survival in Focal Segmental Glomerulosclerosis [published online ahead of print, 2020 Jul 23]. Am J Kidney Dis. 2020;S0272-6386(20)30846-5. doi:10.1053/j.ajkd.2020.04.014 https://www.ajkd.org/article/S0272-6386(20)30846-5/fulltext
² Troost JP, Trachtman H, Nachman PH, et al. An Outcomes-Based Definition of Proteinuria Remission in Focal Segmental Glomerulosclerosis. Clin J Am Soc Nephrol. 2018;13(3):414-421. doi:10.2215/CJN.04780517 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5967666/