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?
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.